https://awalker.org/index.htmlHot News!enen2026-02-09T22:59:18+00:00 hourly 1 2000-01-01T12:00+00:00 Thu, 18 Mar 2021 23:14:24 +0000Health - MS2026-02-09T22:59:18+00:00https://awalker.org/Health/files/e6c9b745948fd480aa1fc22f7330983e-47.html#unique-entry-id-47https://awalker.org/Health/files/e6c9b745948fd480aa1fc22f7330983e-47.html#unique-entry-id-47Been doing some more reading on Cladribine/Mavenclad. And very interesting it was too. The drug was actually initially developed in injectable form for treatment of a form of leukaemia. It works by targeting type B and T lymphocytes (part of the white blood cell battle crew within each of us). It doesn’t ‘appear’ to damage other cells. It is thought that the B & T cells are then rebuilt in our body in a way that they no longer attack the myelin coating on nerve cells.

Reading about the treatment, it sounds a) largely positive, and b) like there’s a surprising amount of supposition on how it works. Drug development does seem to be through a hell of a lot of trial and error, and I guess if something works you don’t need to know why it does (even if that would be nice). You just need to know that it works and hopefully doesn’t cause bigger issues than it solves.

When it went up for approval originally in 2010 it didn’t get it due to there being more patients getting cancer than those in the placebo group. Apparently this was revisited and it seems that the numbers in the placebo group were statistically unusually low i.e. lower than just the national average. When they compared the results of the treatment group to the national average there was in fact no increased cancer risks (apparently). Statistics do need to be understood and challenged in a variety of ways, don’t they?

With the marketing of the drug only permitted since 2017 there can’t be any studies of the long term effects. But so far there haven’t been any significant concerns raised. Side effects can be; a decrease in white blood cells (lymphopenia), herpes virus infections (shingles, cold sores etc), hair loss, and rashes. Most my mates are follically challenged and I guess hair loss wouldn’t be the end of the world—and I’d to save money on haircuts too (though I’d rather not; fingers crossed). Whilst the long term effects are not known, the medium term effects are judged to be less serious than those of similarly effective MS drugs like Alemtuzumab, and Natalizumab (and having done a little more reading jeez the potential side effects of those drugs are indeed a lot more serious).

Cladribine is also not recommended for anyone wanting to start a family. I’m not currently, so that’s okay. For now.

]]>Health - MS2026-01-26T23:45:16+00:00https://awalker.org/Health/files/32f6748515e4329e23efcde76748b31e-46.html#unique-entry-id-46https://awalker.org/Health/files/32f6748515e4329e23efcde76748b31e-46.html#unique-entry-id-46It’s taken a while for the delivery to be sorted, but finally it has now. I’ve now got the new stuff: ‘Mavenclad’ (aka Cladribine) at home. I started them today (Monday). Just got five days of them, then another five days four weeks later. Hopefully the next delivery will go okay.

Hopefully all will go okay. Very different drug to my last one (Tecfidera). A one in ten chance of getting shingles while on it. It’s funny the way 1 in 10 sounds very likely but 90% chance of not getting it says very unlikely. Presentation of data and fears, hey.



Was a bit different when it arrived with the bright banded “Handle with care—CYTOTOXIC” label on the over large box. Instruction from the delivery company: if the tablets are damaged (i.e, if any are broken and partly powder) you don’t take them and have to inform them and they’ll pick up said broken tablets and bring a tablet to replace it. Of course you can’t check them in advance so if I open the last tablet and find it’s broken then it gets messy in terms of taking the full dosage. But I guess everything will be okay. I hope so…



The instructions on taking the tablets out of the container seem a little more complicated than they should be. But I took my first two day’s doses okay. And so far I reckon there’s a 90% chance I wont contract shingles.
]]>Health - MS2025-11-16T13:33:18+00:00https://awalker.org/Health/files/898ec1eae691910854b7e69d5d53a288-44.html#unique-entry-id-44https://awalker.org/Health/files/898ec1eae691910854b7e69d5d53a288-44.html#unique-entry-id-44Over the last few years I’ve seen several consultants, doctors and nurses with respect to the MS. This most recent one last week was the consultant who delivered the original diagnosis to me. There has been a change of treatment from Copaxone to Tecfidera in that time as further developments came. Not sure whether he was involved in the decision making process for that change or not. In any case after talking with me and going through my notes he wondered whether at this point in the illness (and with my age) it may be worth changing to a third drug. I’d never heard of it. It is stronger and works in a different way. It kinda resets your white blood cells to make them less likely to go after your myelin (okay I’m paraphrasing it a lot there). You only take five days of tablets one month (on consecutive days) then another five days the following month. And that’s repeated the next year. In theory that may be the only treatment needed for many years.

The guidance on prescribing it (Mavenclad/Cladribine) has changed so it may not have been an option for very long. It is horrendously expensive but has the advantage of not requiring ongoing treatment and daily tablets for the rest of your life (and the regular palaver of organising and waiting for the monthly deliveries of said tablets etc)—there’s some limited blood monitoring (white blood cell monitoring) around the first couple of months of taking the Cladribine but not much else.

I’ve ten days or so left to think about it, before talking to an MS Nurse again. But at the moment I’m minded to go for it. I’ll do some further research first of course. But twenty days of taking tablets over 13 months is better than 365 days a year for ever, ain’t it?

Watch this space.

- About Cladribine on the MS Society website -

]]>Health - MS2025-08-19T10:13:08+01:00https://awalker.org/Health/files/e39aed298c7afcb76f1e4b5f3f0a44e6-43.html#unique-entry-id-43https://awalker.org/Health/files/e39aed298c7afcb76f1e4b5f3f0a44e6-43.html#unique-entry-id-43I volunteered to be part of a study group being looked at for understanding the effects of Tecfidera on stuff outside of the MS treatment. Specially it was looking at the effects of Tecfidera on the liver. There was some information suggesting that it may have beneficial effects.

So I’ve been to a baseline study when they looked at the liver before I began taking the drug and then a three monthly review, when they looked at the same information with measurements and a FibroScan, and asked about any changes I may have had e.g. in diet etc.

Anyhoo the upshot is I have no more days to appear for the study—unless they give me a call—and just the two visits will be it. While the cirrhosis index (or whatever they called the value) remained unchanged and low/normal, the fattiness of the liver had improved by almost 20%. That’s quite cool. So who knows, people with fatty livers may one day be prescribed Tecfidera for their treatment and it wont just be an MS treatment. All data is useful, and I’m glad I volunteered.
]]>Health - MS2025-06-27T13:18:16+01:00https://awalker.org/Health/files/6fd052a3eda1750bfe53351b1d5dc045-42.html#unique-entry-id-42https://awalker.org/Health/files/6fd052a3eda1750bfe53351b1d5dc045-42.html#unique-entry-id-42This week I had an appointment at the Walton Centre. When I first got it I was a bit surprised by it, as the Neurologist consultant on the appointment was someone I had not heard of or met before. But I have just changed my medication (to Tecfidera from Copaxone) and also volunteered to be part of a study on the effects of the drug, so maybe another consultant would not be that unusual.

In actual fact it turned out to be down to some technical issue at their end in that the appointment was real in terms of date and time, but it wasn’t with the named consultant. It was with a physiotherapist (and a trainee).

It was actually good timing in some ways. Usually I work three or four days but last week I’d worked on five days and on Friday I’d had an issue with severe fatigue in my legs. Friday evening my legs kinda folded underneath me and I ended up sat on the pavement when I was nearly home. A Good Samaritan was passing by and cajoled me into getting into his car for a lift of all of a 150 metres. The stress on my legs with that issue and the general fatigue maybe suggests that I should stick with four days max so that there is more time for recovery. I ended up using a walking stick on Saturday and Sunday to take some pressure off my left knee having not needing it for months.

So on Monday I went into the physio at the neurological centre unsure if it was a good time to be there or not. As it happens they were generally pretty happy with my range of movement and walking (when I thought it was worse than usual). There are obviously issues with the strength and stability but they were happy that I didn’t actually need a follow up physio appointment until I request one. Shocking. They gave me a bit of a runaround the place and then gave me a couple of pages of exercises to do. And I will indeed do them regularly. They said there is no need to stress about missing a day, but to aim for 5 days in 7.

They were very happy about me delivering beer due to the exercise it gives me. They were pleased to hear I always had my walking stick in my bag in my Boy Scout way, especially if I didn’t often need to use it. Always Be Prepared. Of course physio exercises are in addition to the general day to day work and leisure movements.

Hopefully I won't need the walking stick again for many months (or to rely on passing Good Samaritans (that said it was lovely of them to do it and boosts my faith in humanity—even in North Liverpool)). Onwards and Upwards.

]]>Health - MS2025-05-17T10:39:17+01:00https://awalker.org/Health/files/12d82cf1d4baf6e7256e4d54f2736711-41.html#unique-entry-id-41https://awalker.org/Health/files/12d82cf1d4baf6e7256e4d54f2736711-41.html#unique-entry-id-41I’ve just finished the first week of Tecfidera with no problems. I’ve been having Greek yoghurt and Honey each morning for breakfast (instead of just coffee) to take the capsules (food must be taken with them). So now I’ve become a man who has breakfast. The first week is on half of the dose of subsequent doses. I think I suffered a wee bit of flushing on the first day of taking it, but it seems to have not affected me as much since—I’ve been a little flushed a couple of other times, but it’s not been a significant issue. With the unseasonable heat at the moment maybe everyone is feeling a bit flushed at the moment anyway.

The common side effects, like gastro intestinal problems, seems to have dodged me so far. I guess I’ll see if I can successfully dodge those bullets once I’m up to full dosage for a while. Fingers and toes crossed. ]]>Health - MS2025-05-11T12:01:33+01:00https://awalker.org/Health/files/49ef3165abe0bf2db2bebf4e6167ed77-40.html#unique-entry-id-40https://awalker.org/Health/files/49ef3165abe0bf2db2bebf4e6167ed77-40.html#unique-entry-id-40The Copaxone Era has come to an end, and the box of remaining syringes will remain untouched until I find a home for the Sharps Waste. Not sure whether my GP will take it (without charging for it) if they do charge then I’ll take it on my next Walton Centre appointment and they will take it.

So this morning was the first time I took a dose of Tecfidera. They need to be taken with food, and that requires a change for me as I usually have just a coffee or two for breakfast. In future I may well just have Greek yoghurt and honey as my morning accompaniment to the first dimethyl fumarate capsule of the day. The medicine is taken as two doses, always with food and a minimum of four hours apart. In reality that will generally mean breakfast and evening meal. I’m not brilliant with tablets—and these are pretty big compared to any others I’ve had—but it is important that they are swallowed whole to properly deliver the dose. I’m gonna have to improve in swallowing them without coughing them out again, or damaging the coating if I don’t swallow them quickly. Twice a day forever will no doubt count as decent practice.



It is a week of half dose (120 mg) capsules before going on to the 240 mg dose. I haven’t opened that box, but I’m assuming (always dangerous) that the caps are the same size and not double.

I think I did get the flushing side effect a while after taking it. But my guts and beyond, which can commonly be impacted by side effects apparently, seemed unaffected. So that’s good. Will have to see how it is going forward. The booklet that comes with the drug has a notes page for keeping records and I should definitely use it for a while at least.



The medication was delivered in the afternoon. In the morning I went to the Walton Centre to meet a doctor who is undertaking a study of the effect of Tecfidera on livers (the NABS study). Apparently there is some evidence that it can positively impact on the liver and there is then some consideration being made about whether it can be used to treat patients with diseases of the liver.

I had to answer a load of questions on diet (including drink), lifestyle, and exercise. After that I was weighed, measured (height and waist), had bloods taken, and my liver was scanned (using FibroScan) . All this will provide the baseline data for the study. The doctor was actually a liver surgeon and not involved in MS. Going forward I’ll be getting scans and blood tests every three months (I need to go in every three months for the MS monitoring as well). Ideally they will undertake the tests on the same day so I wont need to go in twice.

I’m glad I volunteered for the study. More tests can only assist identifying any issues early doors for me, and more data for the study on the effects of the drug on the liver can only help others (or at least prove one way or another whether it is potentially significantly beneficial).

Incidentally the FibroScan showed my liver was in the normal range for a healthy liver with respect to fat and to stiffness. Now if I hadn’t volunteered then I wouldn’t know this. Already a benefit then. Let’s see what happens over the next three months.
]]>Health - MS2025-04-30T08:14:27+01:00https://awalker.org/Health/files/8be50d7475798139d4d440379d717df0-39.html#unique-entry-id-39https://awalker.org/Health/files/8be50d7475798139d4d440379d717df0-39.html#unique-entry-id-39Well I hadn’t heard from anyone about the proposal of the change of medication from the Copaxone syringes to the Tecfidera tablets, but it was always going to take quiet a while for all the discussions and approvals getting in place. But I got a call asking if I’d be interested in joining a survey program for a study being undertaken at the Walton Centre, which would involve me getting various additional blood tests and scans. Of course I said yes. I’m not sure yet what I’ve agreed to, but if me getting tested helps in increasing the understanding of the damn disease and its treatments then it’s got to be a good thing, ain’t it?

At the end of the phonecall I asked if the Tecfidera approval was progressing. Of course it turned out that’s why they’ve asked me to join the study (which they kept saying was voluntary and I didn’t need to do), it’s because the medication change has indeed been confirmed and the study is about the drug. I'm now getting the drugs delivered in a week too, so i can start on it straight after my baseline tests are done. Fingers crossed it'll be a help and not give me too many side effects (or at least not bad ones).

Onwards and Upwards. ]]>Health - MS2025-03-14T16:30:04+00:00https://awalker.org/Health/files/112c09c151c0ca218b0220c63e279335-38.html#unique-entry-id-38https://awalker.org/Health/files/112c09c151c0ca218b0220c63e279335-38.html#unique-entry-id-38After well over a year between Walton Centre visits I’ve just had two visits within four weeks. During the last one there was some talk about taking a drug (Aubagio) to replace the Copaxone I’ve been on—in light of a recent relapse. When I took a phone call the other week the talk was about a different drug; Tecfidera (dimethyl fumarate). I assume that the addition of a different possibility was after the nurse had spoken to the consultant. The centre sent me a detailed guide to the drug to help my considerations.



There are a quite a few things to consider with the medication (Tecfidera). There are plenty of possible side effects some more common, some quite serious. And the way that the drug works and can impact on people means that there will need to be quarterly blood tests in order to identify potentially significant issues. The more common ones (c.1 in 10) are gastric ones, flushing, and hair loss is listed too. The more significant ones include PML (the mighty mouthful of ‘progressive multifocal leukoencephalopathy), which is where the blood tests come in. It’s handy living near to the Walton Centre as I should just be able to pop in there every 3 months and get the samples taken without messing about with booking appointments (often a more painful experience than the actual needle in the arm).

Interestingly they know that the drug works but they don’t understand completely why. Like Viagra the drug was actually designed for something else (psoriasis) and subsequently found to be useful in the treatment of MS.

Anyways all the side effects are possibilities not guaranteed effects, in any case maybe I’d look good red faced and bald. The main thing is the drug will likely do a better job than Copaxone and—importantly—actually treat the MS to some extent, and not just reduce the risk of a relapse, so I’ve decided to go for it. It’s a no brainer really.

First up was some blood sampling—taken today whilst there—to see if my body is up to it and also to set a baseline. There may be an MRI (but probably not).

It’ll probably be a month or so until I get on it. First the bloods results, then various toing and froing between people for approving and issuing the prescription then getting it ordered (the same home delivery company a those that deliver the Copaxone). The first few months on the drug may be interesting, but even if there are some negative impacts hopefully things would settle down after that. Fingers crossed for everything.]]>Health - MS2025-02-23T14:06:31+00:00https://awalker.org/Health/files/4f6e2002dd93ccc9c79f4d4151978bdb-37.html#unique-entry-id-37https://awalker.org/Health/files/4f6e2002dd93ccc9c79f4d4151978bdb-37.html#unique-entry-id-37Went to the wonderful Walton Centre for a meeting with a couple of the MS Nurses a week or so ago. All in all it was an interesting appointment.

My MS has been steady for the last few years, but over the last few weeks I have been suffering from my first relapse since my initial two relapses, which was back when I was diagnosed.

For those of you who don’t know, a ‘relapse’ is not (as it sounds) a return to any earlier symptoms but relates to something different—a symptom that you haven’t had before. The current relapse is an almost total numbness of the lower torso from above the belly button height and all around from back to front. It is also partially down my left leg. The attack of course is to my nerves (the myelin coating) on the spine or in the brain (or both) in specific areas. In this case it appears to be nerves near the base of the spine.

It’s weird not feeling the syringe with the Copaxone going in to the belly. Whilst not feeling the injection sounds quite nice, it’s not exactly, is it? Not feeling your torso is disorientating at the moment and has other issues relating to it. I am hopeful, as in the previous attacks, that most of the feeling will come back over the next few weeks; but the return of the RRMS has left me pretty stressed to be honest.

One thing that came up in discussion was the issue I have with fatigue when standing up for over an hour or so (eg at a gig). It created much hilarity when the nurse suggested that one of the best ways to reduce the fatigue was to piss myself. I was quite taken aback by this suggestion until after some requests for repetition I found it was an accent issue and she’d actually meant ‘pace’. Much better idea I reckon.

They’ve written a letter for me which I hope to use to apply for an Access Card to help my when attending events (with better access to toilets and seats etc). I’d had to put off going to the Lottery Winners gig at Manchester Academy between Xmas and New Year because I was too worried that I wouldn’t find a place to sit (I was using a walking stick at the time). I was gutted at missing it but it was the correct decision at the time. We shall see whether I, a) get one and b) if it’s worth getting.

Another discussion was around possibly changing my medication from the three times a week Copaxone (glatiramer acetate) injections to daily tablets (Aubagio—terifluomide). When I first went for the injections it was partly due to the worry about purposely lowering your white blood cell count and also requiring regularly blood testing (not required with the Copaxone treatment). Given I am currently attacking myself again lowering the White Blood Cells doesn’t seem as bad an idea at all. The nurse is to call me back over the next few weeks and I am currently minded to opt for the change to Aubagio after the next batch of Copaxone is completed. We shall see.

Watch this space. In the meantime though I need to take some deep, deep breaths and try to stress less in general.
]]>Health - MS2024-11-19T00:29:13+00:00https://awalker.org/Health/files/0820ec2e5d3639f9e3db11e2a303f254-36.html#unique-entry-id-36https://awalker.org/Health/files/0820ec2e5d3639f9e3db11e2a303f254-36.html#unique-entry-id-36Went to physio for just the second time last week. It was a different practitioner than previously, and my next appointment is in just a few weeks. I’ve been given some different exercises to do—and this time their app was working which actually showed the exercises; and could be printed off and emailed to me. Definitely going to do them more regularly now and see what a difference it will make to my legs. It seems I really need to work on straightening the legs fully and that will largely be assisted through stretching the hamstrings out. Just straightening the legs I can feel the hamstrings do their stuff. Handily a few of the exercises can be done without the requirement of any equipment other than steps or a chair—and don’t need the resistance band. So I’ve no excuse not to do them at any point in the day that I can.

I dare say it is important to do it methodically rather than ad hoc though lest they won't get done properly. We’ll see how it goes this month anyway. Onwards and Upwards (with straight legs).]]>Health - MS2024-11-18T12:11:26+00:00https://awalker.org/Health/files/77cfbfe4c64742b5b76fc60cb657faac-35.html#unique-entry-id-35https://awalker.org/Health/files/77cfbfe4c64742b5b76fc60cb657faac-35.html#unique-entry-id-35Last weekend I requested a card from the MS Society which I can use to show people if required that I suffer from MS. That followed the legs fatigue issue the other week. Thought it may come in handy when I am events and need to sit down—or an emergency toilet visit. It came in good time along with a booklet on fatigue. You can print one out from the website but I thought a plastic card would be much better in the long term.

The other reason for getting it is for using the train—especially at this time of the year when they have lots of staff stopping pissed people getting on train platforms. Having an explanation for wobbly legs which isn’t alcohol related could be most useful in December.

Hopefully I won’t need to pull out the card too often, but it’s nice to have one to hand.





Link to MS Society ]]>Health - MS2024-10-14T12:03:20+01:00https://awalker.org/Health/files/716ef1b9cf369a18ef1b1e058dfae1fa-34.html#unique-entry-id-34https://awalker.org/Health/files/716ef1b9cf369a18ef1b1e058dfae1fa-34.html#unique-entry-id-34Went to the Casino gig on Friday, which was wonderful, but it was marred for me and—hopefully—only me by my damn legs. I stood at the front leaning against the rail for over two hours through the Heavy North and Casino sets and didn’t realise until I went to leave that my legs had suffered from all the standing. My legs just folded under me and I could not get to a fully upright position. Thankfully a couple of local gig buddies recognised an issue and a member of staff came over to get me to an external lift rather than having to negotiate the stairs. I am grateful for the assistance of the 02 staff in doing that (and my buddies for alerting them)—it helped enormously.

Rather than struggle to walk to Queen Square for a bus I opted to get an Uber. A nice guy, Mansoor from Stockport, picked me up and delivered me safely home. Just sitting in the taxi had helped and I was soon going up and down the stairs at home with no issues at all. In summary I know my limits now and will no longer stand for a couple of hours without breaking it up with some seated breaks (even if that is just on the floor). It has happened to me before a couple of times—and they were also at gigs. MS sufferers quite famously do struggle with fatigue, most notably in the legs—and boy is it scary and frustrating that you can’t even stand up and feel you are going to fold onto the floor.

Funnily enough I've another new thing I get now; it's an itch near my right elbow. It's a phantom from nerves either in my head or body and it is well weird not being able to scratch an itch. ]]>Health - MS2024-08-20T07:54:57+01:00https://awalker.org/Health/files/ab64529ae41886c4004decd125534f65-33.html#unique-entry-id-33https://awalker.org/Health/files/ab64529ae41886c4004decd125534f65-33.html#unique-entry-id-33A couple of months or so since my first physio appointment it was time for my second earlier today. It went well. I mean my knees—especially my left one—are a little sore and stiff of course but the physio visit itself was fine.

Turns out my left knee is a bit more mobile than it was and on the measurements both knees could move to a degree classed as normal for people even without osteoarthritis. So maybe the physio I have been doing has actually been doing some good. Who’d have thunk it!?
I’ve been doing the physio a bit ad hoc though, so hopefully if I can arrange myself so that I can do it regularly three times a week or so, rather than ad hoc it’d be even better.

Last time I went to physio it so happened that my movement was better than normal (of course), and today was a little better than normal too. But in the week following my last visit I had a ‘trick knee’ episode for the first—and so far only—time. That is when the knee out of nowhere just suddenly fails to do its job and I went sprawling. I was fine straight afterwards and it hasn’t happened—or felt like happening—again. It was disconcerting at the time and for a couple of weeks I suffered from a little paranoia that it would reoccur.

The physio said, ‘Yeah, that can happen.’ But there’s nought to do about it, ultimately ‘It is what it is’ I guess.

I told him that I am aware that sometimes when my knee is a bit more sore or stiff than usual I find myself almost tiptoeing on the left leg—that is, not fully straightening it out to avoid the pain. It’s not THAT painful but I guess it is an automatic thing to try and avoid even a little, when you can. But I said I was also conscious that by not walking properly with that leg (fully extending it) then I was weakening the leg by not ‘exercising’ it properly. And that I was fighting the urge to do it when I could.

Anyway, in summary everything I have been doing (or think about doing) is pretty much there and he said that I didn’t need to come to another appointment quite so soon, if I didn’t want to. I was in agreement and said maybe three or even six months (I could always contact them in the meantime if something changes). He wasn’t sure an appointment six months away was possible ‘but give it a go.’ In the end I’ve got one arranged for three months hence. It wont be with the same physio unfortunately (they work on rotation) but I need to continue with the physio (more regularly) and go out on my bike another once or twice a week too. Should be able to do that.]]>Health - MS2024-06-30T14:49:20+01:00https://awalker.org/Health/files/7b08f89ed82b02cd80c688fa211af471-32.html#unique-entry-id-32https://awalker.org/Health/files/7b08f89ed82b02cd80c688fa211af471-32.html#unique-entry-id-32Been having problems with my knees for over a year now. I didn’t realise it was that long until I noticed when I had the X-ray done on my left knee (May last year—where does the time go when it’s not around here?). In January I had a week when I needed a walking stick—which thankfully so far has not reoccured. And on Friday I had my first "musculoskeletal" appointment at Fazakerley Hospital: I think this is basically a physio but with a more complicated spelling.

It was a good appointment—if taking about having osteoarthritis is ever a good thing. He showed the X-ray of my knee and pointed out the smaller gap between the bones. Ho hum. He showed me a few exercises to do to build strength in the legs. There is a slight weakness in my left leg but after walking funny for a year that would seem inevitable. But doing these exercises—with one of those resistance band thingymewhatsits—three or four days a week should help the upper leg strength and hips a fair bit and help in reducing the weakness and the pain in the knee joints.

He said a couple of things which helped: I’m apparently “high functioning”. Or perhaps I misheard and I’m just functioning and he thought I was a bit high at the time. He also said my weight was fine and I didn’t need to lose any. Huzzah—he’s on my Christmas card list! I guess lugging casks of beer around has helped on some of the fitness side. It was good that all we talked about was exercises and there was no need to talk in any seriousness about the dreaded knee replacement options. All good.

Trying to show me a page on the computer with the exercises on he found that the pages were “still” not accessible as someone in accounts hasn’t paid for the software/website. So he ended up trying to write them down (not ideal, sometimes a picture really is worth a thousand words). I should be able to remember them and I guess I’ll be able to find a webpage showing these same exercises too.

He didn’t notice my posterior dislocated shoulder and was quite surprised at that. He gave me a good exercise to help with that in addition to the ones for the legs. I’ve got a second appointment in six weeks or so, let’s see if I can keep up with the exercises. In the meantime if you see me crouching or slightly bent of legs in a shop, at a bar or a bus stop be assured I am just exercising—probably.
]]>Health - MS2024-01-13T11:07:12+00:00https://awalker.org/Health/files/ce28ffb468fbdcd6482309239c624f4b-31.html#unique-entry-id-31https://awalker.org/Health/files/ce28ffb468fbdcd6482309239c624f4b-31.html#unique-entry-id-31This has not been the best week off in some ways, but hopefully—slowly—things will be moving the right way from here on in. I’ve had a swollen knee for a few weeks now, which has got progressively worse and more painful. Have been in for several tests. A month or so before Christmas I had my second hydrocortisone injection (for the year) in my left knee. At the same time they syringed a fair bit of fluid out. I then went for blood tests to a phlebotomy centre around the same time. It was good to get done. But not long later and my knee became worse than it’s ever been-particularly in the last couple of weeks.

I had a message from the doctor’s before Christmas to arrange an appointment with a GP to discuss the test findings and have been trying ever since to get one. And failing—miserably. They ask me to make an appointment, but you can’t make one in advance, you can only make one ‘on the day’. It’s crazy you can’t even get one for five or ten days (or whatever) hence. I’m sure there’s a perfectly good reason for it. But… meh. So I’ve been calling around 8am for weeks to get the same message, ‘Sorry, all the appointments for today have been taken.’ They only give the appointments at 8am. By 8:10: they’re all gone. It’s like trying to get a Glastonbury ticket. But with a less enticing ticket.

So what a week this has been. I’ve taken it off to relax and hopefully let the leg recover—at least a little. I had hoped I’d get out and about on a train somewhere during the week if my leg did improve. And so what have this week’s highlights been? Well, in order of occurrence (if not importance, or excitement):

1. Buying and receiving my first ever walking stick on Monday. They don’t half take the pressure of your knee when you use one. I got a foldable one so I can take it around with me in my constant rucksack companion should I decide I need it after not initially requiring it on any given day (very Boy Scout of me. Dib dib dib.).
2. Actually getting a GP appointment on Wednesday (thanks to a cancellation from somebody; and me no doubt sounding thoroughly despondent when I was originally given the, ‘all the appointments for the day had gone’. The call back was much appreciated.).
3. Finding out from the GP that I’m suffering from gout. May sound weird, but I’m genuinely made up with that.
4. Paying for an Annual Prescription Certificate so I won’t have to suffer the monthly charges as painfully now that I’m on more tablets.
5. Picking up my prescription on Thursday—and getting some tablets down me within the hour!

It’s more than annoying, of course, that I could have been given that prescription before Xmas, had I been able to meet my GP initially about the blood (and fluid off-the-knee) results, and then maybe I’d not have suffered with my knee anything like as much as I have since (and may not have needed to buy and use a walking stick). I’ve never needed a walking stick before this current issue and it’s been difficult to go through first needing and then using it. Getting on and off buses is a painful and sometimes slow and risky affair.

But hell, we are where we are, and I’m made up with the gout diagnosis: as it is at least treatable. Clearly with my MS there was some worry (however misplaced), and this was compounded by the osteoarthritis in my knee only recently identified. The dreaded thought of a knee replacement… please, no.

Gout and osteoarthritis is a wicked combination. For osteoarthritis you are told to exercise the joint and for the gout you are told to rest it. So whatever you do/don’t do it is simultaneously wrong & right. It’s an unsolvable conundrum. But while the arthritis won’t get better and can’t be treated (other than painkillers if particularly bad) at least the gout can. Which is why I’m happy about the current prognosis.

I’m finally on some pills. And I can only hope that they do their stuff relatively quickly. It’d be great not to need the new walking stick (however happy I am with its purchase). The treatment should eventually result in a reduction in the fluid around the knee and then I’ll be bounding up the stairs in no time (rather than worrying about negotiating them). Hope Springs Eternal and all that. Onwards and Upwards (not painfully downwards!).]]>Health - MS2023-11-20T10:10:14+00:00https://awalker.org/Health/files/f41cd61a27db0f387d002779c49ce349-30.html#unique-entry-id-30https://awalker.org/Health/files/f41cd61a27db0f387d002779c49ce349-30.html#unique-entry-id-30Early in the year I discovered I had Arthritis. It wasn't exactly difficult. I mean out of nowhere I suddenly began to have very sore knees—and pretty swollen too. The way it came on suddenly I found strange. The GP had a look at them and sent me for X-rays to confirm: it did. In May I went into the GP and discussed and then hydrocortisone was offered to me, which I took on the spot. The jab was put into my knee, where the injection gets put in behind the patella. Didn't hurt much at all at the time ('just a sharp scratch') and didn't really hurt later either (despite being told 'I'd probably be swearing about it later'). Recently the pain in the left knee in particular had got really bad again. After weeks of struggling up stairs and walking like an old man I returned to the practice at the weekend in the hope I'd get another injection.

It was a different GP this time and as we walked in I got told there would be two student nurses in with us. Eek! I signed some paperwork to say I was happy to get an injection. The GP seemed a little reticent about giving cortisone in general, he suggested that damage to the knees can result from the wear and tear in the joint after using them—'Sometimes a new knee may be better.' Eek (again). I'm not really a fan of surgery in general and a new knee sounds like not a good thing at all. I mean I'd only had ONE injection to that point. It seems a big jump to surgery from that. Mind you with my knees everything seems like a big jump. Anyway, he said the waiting list to see someone from orthopaedics is long and suggested that if I was in for another jab again (which I guess is quite probable) he'd put me forward to orthopaedics at that point—therefore with the waiting list being that long (i'd probably still not see them by then) best go on the list now. I agreed to that.

Then we got around to the injection. There was a lot of fluid around my knee—which he illustrated by pressing the swelling down and watching the fluid wash back in—and he suggested taking some of that out at the same time. He took out a big syringe full of fluid from my knee. It was good to do. The hydrocortisone doesn't begin to do its stuff for a while, but I was finding walking easier on the day of the injection. Think the removal of all that liquid was a damn good thing.

Maybe next time I'll get them to drain my knee instead of (rather than as well as) the injection. Or perhaps I can get a small tap installed to save going into the medical centre. We shall see.

———

Just before I was about to go I remembered that I hadn't heard from the practice since my blood tests earlier in the year. The practice asks everyone over fifty (or maybe even younger) to get an Annual Health Check, which is largely done through blood tests. I don't do it every year, but I did this one. I went for a test and a week later was asked to go again, then they asked me to go for a third one. Repeat tests over the space of a month, and I'd never been spoken to about them (i.e. whether the results had revealed a problem, or why I had to get three lots). I'd forgotten about it to be honest—so remembering at this point must have been seeing the syringe.

Thankfully it turned out to be okay. One of the tests from the first batch wasn't undertaken (maybe a lost or damaged vial; or some other lab issue). When they did do that test there was a slightly low blood result and the third one was therefore to check that out. The third one was fine.

So a) I found the reason for there being three tests and not one, and b) everything was fine. They didn't confirm the ABV though. Communication, communication. ]]>Health - MS2023-09-28T23:09:57+01:00https://awalker.org/Health/files/cb3ac60ce926f4c64c2ec3f723c02058-29.html#unique-entry-id-29https://awalker.org/Health/files/cb3ac60ce926f4c64c2ec3f723c02058-29.html#unique-entry-id-29Every year or so I get a a meeting with my Multiple Sclerosis specialist in the—most excellent— Walton Centre and today was that day. It’s a bit of a funny one because of course you know how you think you are but there is always that element of doubt that they'll find something has changed that you haven't noticed yourself. Of course you can take the opportunity to report any changes and ask any questions.

The only thing I had to report really was that I’d been having issues with my knees over recent months which had consequently resulted in some quite bad issues with my legs a couple of weeks ago. I was majorly incapacitated for a few days—and for a short time I was seriously worried (Google searches at that time included ‘how to walk with a cane’). But as the days after the most severe issues passed my calves and thighs both got less painful and it seemed clear that the issues I’d had with my whole legs (rather than just the knees) was a result of a long day standing up resulting in fatigue and me trying ferociously hard to remain upright and not folding in on my knees (and failing repeatedly). The strain in trying not to collapse on my arse was evidently felt in all the muscles I’d used fighting gravity (and the frequently failing had probably bruised my upper legs too). Fatigue is a common issue with MS but I hadn’t knowingly felt the effects of it before. I guess it really was a combination of my newly arthritic knees and MS (purely in terms of muscle fatigue)—and basically standing up for too long on that one day. I will definitely sit down more often when out and about from now on. That said over the last couple of weeks I’ve found when you are looking for a place to sit when you’re out it is amazing how difficult it can be to find appropriate places.
The doc confirmed it was likely to be that rather than anything directly MS related (but of course call up the Walton Centre if anything changes). And from the check up on eyes, coordination, arms and leg strength, and nerves/feeling etc he reported that everything was the same as when I first came. All in all Happy Days!



Exercises. Exercises.

Of course it means I still have my knee issues to deal with, but it is great to be pretty damn sure it is not MS related—and my meeting final notes say I have not had a 'relapse' — Huzzah! So it’ll be a case of knee and leg exercises, rest when appropriate, and pain management. Google searches over the last few weeks have involved pain management and knee exercises. The joys of getting older: you really know you’re getting older when your last search engine entry was ‘udder cream’ (thanks, Neil for that one).



Udder Cream. Really? Really!]]>Health - MS2023-04-19T07:49:21+01:00https://awalker.org/Health/files/eb1f53ca6936586a62114611b7920587-27.html#unique-entry-id-27https://awalker.org/Health/files/eb1f53ca6936586a62114611b7920587-27.html#unique-entry-id-27I only found out relatively recently that people with MS are entitled to apply for a disability rail card. The card entitles you (and someone travelling with you) to 1/3rd off rail fares. Of course this year I've already been to Birmingham, Lancaster, Manchester, Preston etc and would have saved a fair (fare) bit if I'd known then. Anyway, I'll no doubt be out and about on the trains again, so it was definitely worth applying now.

You can download and fill in a form to post if you want, but it is quick and simple online. That said be aware that the rail card website itself makes no mention of MS or other similar issues being accepted for the card. And in fact the list of things listed as accepted as proof of disability on the webpage makes it look like it just isn't. Do not be put off by this, just carry on with the application.

First things first. Before applying make sure you have a copy (a photo or pdf etc) of a letter giving your diagnosis. I just got a copy of one of the first letters I received - which was a letter from the hospital to my GP cc'd to me. And you will need a passport style photo (digitally if you're applying online - so just take a photo of a passport photo on your phone if need be).

Once you know you have a letter and a photo then just get on to the website at railcard.co.uk. You'll only have a small amount of information to fill in; the usual name, address, email et al. You'll be asked if you want a three year card (£54) or a one year card (£20) and then if you want a plastic card to be posted out, or a digital version on your phone (you can't have both). You'll be asked whether you're applying for the card for yourself or someone you know. Then you'll get to upload your document and photo.


No sign of MS on here, but don't worry

After you've filled in your details you'll be asked to select the reason for the disability and this is where it may be off putting - as you have to click on one of the long list including whether you are receiving PIP payment, receive an attendance allowance, have epilepsy, or a range of other options. As there is no simply relevant to MS click on any of these and get uploading. In my application I just clicked the first on the list PIP payment (which I don't get) and then instead of uploading a proof of PIP I uploaded my diagnosis letter.

After you've uploaded that you'll have to upload the photo and then you're pretty much there. Simple.

It says on the website that the process will take up to 5 days. In fact I applied for mine on a Sunday and received the digital card within 24 hours. Brilliant.

Whilst I wasn't challenged about the application I assume some may be depending on what you have been able to upload or whether there were any other issues with the application process. Just know that with an MS diagnosis YOU ARE entitled to get one. I suspect that it would take a single email or phone call to address any such queries. More information on travelling with MS can be found on the MS society website.


]]>Health - MS2022-07-04T11:45:02+01:00https://awalker.org/Health/files/3fa694b5a29d7cb902e0599670a725f4-26.html#unique-entry-id-26https://awalker.org/Health/files/3fa694b5a29d7cb902e0599670a725f4-26.html#unique-entry-id-26A Welcome Drip and An Unwelcome Pressure
(or 'The Drip & Assumption is the Mother of')

Following my acceptance into the less than exclusive Covid Club I'd been inundated with texts and phone calls from the NHS (automated), GP, and from local NHS service teams. After sending the PCR test on Friday I got sent a text reporting the positive result to me on Saturday night. All very efficient. I'd been told previously that I may be able to get one of a couple of treatment options due to my MS. The options were tablets (a five day course) or a single half hour infusion (drip). I am not entirely sure on the true nature of the risk from Covid to someone with MS as opposed to someone without it. Indeed I expect the biggest risk from an episode of Covid to me would be the danger of it kickstarting a relapse. It is well documented that being at a low ebb, be it from illness or stress, can be a contributory factor to relapses. And so whilst I am not feeling that bad at the moment from it any treatment options which could spare me the unknown effects of a relapse had to be welcome. If I was offered the choice I would go for the infusion.

Yesterday morning I had a phone call from a local service team who asked a few questions about the Covid and when I first had symptoms etc. I was a little unsure whether it was Monday afternoon or the early hours of Tuesday when I first felt something uncomfortable at the back of my throat – and subsequently the ridiculously runny nose. But I said Monday, not thinking 12/24 hours would make much of a difference. By the end of the call though it did sound like I may have talked myself out of the treatment option as that would make it the seventh day since contracting it: the treatment needs to be taken very early doors (ideally within 5 days of infection) to be most effective. She asked though whether I could make it to a treatment centre if the clinical decision was made to give me an infusion and I answered in the affirmative. I was told if they hadn't called me by 4pm then to call them to chase. As it happened I got a call by 12:30 and was told to go to Garston Treatment Centre for a 13:30 appointment.


The Procrastinator at Garston Treatment Centre

An hour after the phone call then I was sat on a soft blue chair in a small white room being asked a few questions, and in no time I was put on the drip. I was put on Sotrovimab (Xevudy) which is a 'neutralising monoclonal antibody', which apparently works by sticking to a spike protein on the surface of the virus, which stops the virus getting into the lungs and causing infection. The cannula was inserted first time and the drip did its thing (dripping) and half an hour so later the bag was empty and I guess I was fuller. Having had the treatment the risks of any infection getting so bad I could require hospital treatment are significantly reduced. In short it was a few hours well spent on Sunday afternoon.


The after effect of a hole in the arm. Well you wouldn't want to see the cannula in place.

Whilst I was there my O2 stats were taken and I was passed a monitor to use at home; I don't get to keep it, it's just a loan for a couple of weeks to take a fortnight of measurements. Before going I was a bit worried about the O2. I mean to my knowledge I've never had Covid before, but what if I had and just didn't know? What if the O2 results showed unbeknownst to me I'd been significantly impacted? I needn't have worried the results were normal (between 96 and 99%). And have continued to be 98 or 99 since I've monitored at home. I'll get a daily text from the NHS asking to forward the O2 result for the day, and I have a table to keep the records of three readings or so a day. Being able to record it provides at the very least some peace of mind.

I read some of my current book, 'Homage to Gaia' by James Lovelock, and the nurse seemed genuinely interested in it, writing the title down to look it up. Hey, I'm an influencer! Couldn't get much reading done during the hour and half there. There were the questions, the arm taken out by the infusion, the general chat and the regular blood pressure observations. But I got some reading done. However the blood pressure records were important. I've had medication for elevated blood pressure for years, but since the MS diagnosis I've taken my eye of the ball with it and not been taking the tablets (Amlopodine) or monitoring it; partly because of my focus on the MS/Copaxone but mainly because I've lost quite a lot of weight and got significantly fitter since becoming a drayman nine months ago. With this compounded ball of assumption & hope I'd decided I probably didn't need the pills any more. I've never been a fan of pills really. Okay, I may not be a fan of pills but I am a firm believer in assumption being the mother of fuck up…

The monitoring over those ninety minutes yesterday made me restart on the Amlopodine as soon as I got back home – I think I've only got about ten days supply left over from when I stopped. I'll also start taking daily blood pressure readings from here on in so I've got records to give the GP as I look to get back to tablet popping. It nicely links in with the Gaia book too, as James Lovelock, in the chapters I'm currently reading, is going through several health travails (coincidentally his first wife suffered badly with MS for years).

When I got back home I had a phone call from a different Liverpool hospital. They 'had my medication ready' – what medication? 'The Covid treatment.' I told them I'd just been for the infusion. It appeared due to the involvement of the GP and the general NHS system there had been two routes progressed in unison without one trumping the other. There is so much going on with it then there is a danger that it must happen a lot, especially with time being of the essence. Well no tablets for me now. I was offered both the tablets and the infusion then; much better than being offered neither.


It's been a strange week. I have hardly left the house. But I've not felt too bad throughout and I expect the treatment can only help reduce the effects & risks. Waking up on Monday I still felt okay. Not going to do an LFT until the afternoon. I can't wait to see that dreaded line get fainter and then disappear. I took my Amlopodine after my first (essential) coffee - and I'll take my blood pressure later. Today will have included a Copaxone injection to my left leg, an Amlopodine tablet, an LFT, O2 measurements, and blood pressure monitoring. It sounds a lot when you write it down (it's the long words), but it's not really. One pill (daily), one injection (3 times a week), and some measurements. After all if you've got the measurements you can dispense with the assumptions.

Incidentally, the wonderful James Lovelock is 102 and still very much with us.
]]>Health - MS2022-07-01T21:12:47+01:00https://awalker.org/Health/files/33a8de92e4278070e49e4b8f07c1c29b-25.html#unique-entry-id-25https://awalker.org/Health/files/33a8de92e4278070e49e4b8f07c1c29b-25.html#unique-entry-id-25A Different LFT Surprise

I've been dodging Covid for the whole time it's been ravaging its way up, down and around the country. Clearly I've not been hiding from it; in so much as I've gone out to places like work and pubs & bars, but I have continued to avoid crowded indoor places, and wear a mask when I am on public transport and shopping in supermarkets and the like.

A couple of times last weekend though I went out unintentionally without a mask and travelled on a train (once) and bus (three times). This was because of the hot weather meaning I wasn't with my usual jacket and/or I was still in my shorts (whilst my masks remained at home in my jackets and jeans). It's either God's way of telling me not to wear shorts and to always stick with my go to leather jackets – or it could just be down to me remembering every time I get to the door to check for "phone-keys-wallet… AND mask." The only time I was in a moderately busy room was the open mic on Thursday night in the Belvedere. The subsequent mics on Sunday and Monday were both very quiet and well ventilated. I tested positive for Covid with a Lateral Flow Test (LFT) on the following Thursday and my suspicion is that I've picked it up on one of my No.17 bus journeys, where you can't help but sit close to people for half an hour or so. It's a lot easier to find space and avoid people in town that it is on a bus. But who knows?

I've purposely avoided busy places in the main, with the odd exception for short periods – like the periodically busy/calm cycle whilst standing in the Grapes on a Friday night – and during the League Cup Final earlier in the year. The city's pubs have been much quieter than pre-pandemic for several reasons no doubt: eg the habits of people now used to sitting at home with some cans, the desire of people to avoid crowds, and the ever growing costs of life in general. So pubs have really not been a fearful place (at least my type of ale pubs) for meeting in over crowded atmospheres with challenging ventilation issues. And it's been easy to move on to quieter places within a hostelry or to another if I was concerned about it.

Whilst I've been carrying on with life I hardly know a soul who hasn't had the disease. And many have had it multiple times. I know I've been lucky not to have picked it up before.

A friend very recently managed to pass me a few boxes of LFTs which was much appreciated at the time – and even more so now. On Monday or Tuesday I began to feel a bit of a dry throat and then had two days of a very runny nose. I'm not usually one for getting colds, and although I sometimes (once ever three years or so) suffer a little from hay fever, I decided to test daily; as the sore throat in particular was unusual.



It was negative for the first few days but as the test on Thursday emerged to taunt me with the strident line, stating I was not in fact invulnerable to this virus, I was more than disappointed but was not surprised. It's set me up for an uncertain week or so. First though, because of my MS, I was categorised as a high risk and had been provided with a PCR test to use and send off in the event of a positive LFT. So on Friday morning I duly took the test and found a Priority Postbox.

In the meantime I'd completed the NHS reporting of the LFT and texts started to come through from that. The way they were worded were typical of the confusion of ambiguous statements. They also kind of indicated that the PCR was a bit of a waste of time in so much as they already stated that the ball could well be rolling with respect to antivirals notwithstanding the PCR result. Not sure whether this is because of a change in stance since sending out the PCRs or not – things by necessity are understandably changing all the time. But I was glad I'd made the effort to get the test done and sent in any case as surely the more data they have the better.

In the afternoon I got a call from my own GP to say that they'd seen my LFT result and she checked a few things re dates and symptoms etc. I must say I was actually impressed that the national system had flagged up the result to the GP surgery and that they had been able to follow it up so quickly. You sometimes assume these things just get lost in a black hole. But credit given where credit is due.

She said that I may be entitled to get antivirals. I told her that I'd had a text saying as much too. She confirmed that she'd fill in a form from her side which may increase the chances as she wasn't sure how the weekends were being served by the people dealing with things at the moment. I agreed to her doing that. In addition she said they should be able to supply a finger oxygen meter, which I definitely welcomed.

Now it's a case of waiting for the PCR result to be texted (I'm assuming Monday) and to deal with any follow up phone calls from the NHS on antivirals and the oximeter.

Whilst I did the PCR on Friday, I didn't bother doing another LFT. It was still going to positive just one day after the first after all. So I did my second one this morning (Saturday). Again it was positive – and if anything a slightly darker band. I wasn't feeling any worse though. I'll just have to see how many days it'll be…

In general my Covid episode has been:

Bit of a dry/sore throat - Monday on (first noticeable symptom)
Very runny nose - Monday on
Phlegm on the chest - Tuesday onwards
Some fever - Tuesday onwards
Stuffy head/slight headache - Tuesday on
Positive LFT - Thursday (30th Jun) - had negative LFTs Monday-Wednesday

Runny nose thankfully lasted only a couple of days
Phlegm has decreased each day and isn't that noticeable currently (Saturday)
Stuffy head and slight fever hasn't changed much, possibly slight dehydration affecting my head but am trying to keep on top of that.
In fact I think Tuesday/Wednesday morning was the worst of it.

I'm not intending to go out of the house much at all and when I do eg to a shop, I'll wear a mask and get in and out without hanging about. I've got enough food and drink for the weekend – if I do need anything in the next few days it'll probably only be a couple of pints of milk. Sadly there will be no social time. It's all a bit of a lottery when the tests may start to give favourable results. I've had mates okay after five days or so and others well over double that. I fear I am going to be so disappointed next Wednesday – I've got tickets for the brilliant Felice Brothers at Leaf and I'm going to be gutted if I'm not negative by then (in all probability I'll end up having to pass my ticket on to someone else). That will be really disappointing.

Next Friday I was supposed to be going to Bishop's Castle for our annual Shropshire pilgrimage. It could be a close call too – but in any case I've heard a couple of dubious comments from others that our trip may be cancelled anyway! I'll be doubly gutted to miss out on a great gig and boss camping weekend in one week. But I guess the immediate concern is health; both mine and the 'not passing it on' thing.



Whilst I am isolating it is still okay to get out whilst avoiding people. The legalities and common sense permit it. This morning I popped out for half an hour on my bike. Boy I did find it hard work. I wasn't much slower than usual (anywhere between 9.5 and 10.5 mph is about standard for me) – and the park has those bloody gates which makes you get off your bike to get through them so timing is messed up. By the time I got back home I had a right sweat on. This should not really be the case. But I guess the body is trying to do its fighting the infection thing. I'm not entirely sure if exercising whilst fighting an infection is the right thing or the exact opposite of it. Perhaps I should use the doubt as an excuse to sit around and do nothing. I do wonder whether my O2 stats will be right or not, and I do hope I get given a meter this week to check that out.

In summary, (besides being a bugger to finally succumb to this damnable disease) I'm doing okay. The phlegm was horrible for a day or so, the runny nose too (but people with hay fever this year have had it much worse), and the heavy head is a bit of an annoyance. The main thing is the fever. It's not that high, but it doesn't take much to overheat me. I'll have to route around for where I've put my thermometer to see what my temperatures are trending at. I am quite tired too. But when you get a fever you get tired so hopefully it's just that. I really want to be better by Wednesday so that I can go to a gig. For that I am a hopeful loon, but not an expectant one. As for Bishop's Castle, that is apparently anyones guess.

Lastly, but I guess most importantly, is how this may affect my MS. The biggest fear from any change in circumstances is that it preludes a relapse. There is no reason to think it will, but it could also be argued that there is no reason to say that it won't. Both Covid and MS are such contrary unpredictable bastards. Of course the hope is that it makes not a jot of difference at this time. My fingers are crossed.]]>Health - MS2022-04-04T16:01:38+01:00https://awalker.org/Health/files/5ce80005185a615e92c6b69c0a0708a4-24.html#unique-entry-id-24https://awalker.org/Health/files/5ce80005185a615e92c6b69c0a0708a4-24.html#unique-entry-id-24An LFT Surprise - and An Erroneous Injection

Last week I tried daily to get another pack of Covid LFTs via the website and by calling in on several chemists. I failed on all counts. This morning though I received a box in the post. So I guess they have decided to post them out unbidden in the first instance to those they consider at a higher risk - and MS is within that. It's a strange situation as I'm sure some people with MS are a lot higher risk than others - especially those on drugs which suppress the immune system. Thankfully I'm not on those drugs currently. Copaxone does not suppress the immune system, which is one of the reasons I chose the injection rather than the tablets originally.

I am not sure if having MS makes you 'immunosuppressed' per se. I mean your body is attacking itself, but it is the coating on the nerve cells that are attacked. I'm not entirely sure that that is the same thing. Ho hum. I think I need to do a bit more reading around it.




I took the opportunity to do another test this morning and saw that one wonderful line was unaccompanied. I'm continuing to wear a face mask on public transport and in shops, but confident enough to go to bars and restaurants where I don't use them. I know this confuses some people, but I'm comfortable with it. I'm not generally is small places and they're not often packed - and ventilation is usually pretty good. So far I've never been ill as far as I know; and I am yet to test positive with the LFTs (or the various tests I had when I was in the hospital being diagnosed with MS). Continued testing will be great. And despite what people think, it's not just a cold - and I would feel so guilty if I was the cause of someone else getting it who could no longer visit an elderly relative - or even just go on holiday. The government's messaging about Covid is so confused for people (I dare say by design). Telling people that they should isolate but don't have to is a nonsense. Yeah, but no but…

Made my first mistake with Copaxone last week when I forgot to change the depth of the auto injector. I ended up injecting it at 4mm instead of 8mm into my belly. It was too shallow for a subcutaneous injection. I won't make the mistake again. At least I'll hope not to.
]]>Health - MS2022-03-25T17:48:44+00:00https://awalker.org/Health/files/aa091048ea2c20c5401327521402f71f-23.html#unique-entry-id-23https://awalker.org/Health/files/aa091048ea2c20c5401327521402f71f-23.html#unique-entry-id-23It was only just over a year ago I got diagnosed as having Multiple Sclerosis. I reported this after a few weeks to the DVLA and they wrote back a couple of times to say they were looking at it. In the meantime my licence stood as it was. Finally about a year later I've had a letter telling me I will be transferred to a three year Medical Licence. The medical licences apparently run for either 1, 2 or 3 years. So I guess it's the least in your face one.I can no longer drive buses or lorries without appealing it. It doesn't change for the kind of thing I may want it for (i.e. a car, a van, or a motorbike). But still it's a thing I guess which doesn't affect everyone and it makes you think.

Had to send my Driving Licence back today then and they'll issue the new one and then every three years afterwards - if necessary through consultation with my doctors, Hopefully they'll be joined up enough to contact my MS doctor rather than my GP, because my GP doesn't know diddly squat about the MS other than being copied in on some letters.

My driving licence dates back a while. And my photo has me caught in the headlights of a podgy phase. A new licence would be a positive thing. Apart from they haven't asked me to add an up to date photo. So it seems if I have to get a new licence issued every three years I'm gonna be stuck with the podgy period.

]]>Health - MS2022-02-10T13:17:17+00:00https://awalker.org/Health/files/b16bf7c574acee12c92de1688db99503-22.html#unique-entry-id-22https://awalker.org/Health/files/b16bf7c574acee12c92de1688db99503-22.html#unique-entry-id-22Oh my, it has been five months since I've put anything in this Health section of the website. That, my friends, is a good thing as it basically means that things have been moving along fine with regard to the MS. My diagnosis was eleven months ago. This time last year, pre-diagnosis, I was having the frightening problem of not being able to feel anything much at all from my waist down to my toes and was worrying that I had a brain tumour. Now I've not got anything severe at all: some minor pins and needles in the feet and the very occasional slight MS hug malarkey. The only thing I really notice day to day is a reduced bladder capacity resulting in more frequent – and sometimes hurried! – visits to dewater. It's not usually a problem; though if I think I might want to go then I should definitely should take the next opportunity!

Anyways, today I went to the Walton Centre to see my MS Doctor. The last time I saw him in person was when I was in the hospital bed and he was giving me the news of my diagnosis following the MRIs. Other than that I've had one Zoom call with him (and a student), and I've had two or three calls from the Walton Centre MS nurses.

The actual appointment with my Dr – and of course a student – went well. I reported my current and recent (medium term) condition i.e. that I was probably fitter than I had been for years, having taken on a physical job, and that I was also lighter than I've been for several/many years. He did some standard tests: walk toe to heel, hands out and touch your nose without looking, pushing legs/arms against his pushes, checking feelings in feet and banging the knees with a nobbly hammer and all that kind of thing. I'm not sure what the pass score was but I think I'm pretty sure I blitzed it.

The Doc asked if I had any questions and I didn't really apart from to ask if there was much happening with regard to understanding the disease. He laughed a little and said MS was one of the most studied neurological diseases but that they really didn't understand a lot about the whole thing – including why some people get worse attacks than others, or why the frequency varied so much etc. He said the Walton Centre were likely to get funding into a study looking into some aspects of that (I think with the consideration that there is a genetic component to it). I wasn't asked at this time, but of course I'd be happy to get involved with any study (think it will be largely through blood tests). Other than that he said progress was basically incremental.

All in all though it was a very quick (about ten minutes) appointment. Partly of course because things are progressing smoothy at the moment – and long may that continue. At the end of the meeting he suggested meeting one of the MS Nurses as even if I didn't really have any questions it was good to put a face to a name after all the telephone only contact. I took the opportunity and had a nice face to face meeting with Jenni – and MS nurse with specialty in movement disorders. She didn't have anything to add as things are going well at the moment. She did say exercise was really good so the physical job is definitely a positive thing. As far as putting a face to a name it was actually just half a face for now as we were masked up. Perhaps by the time I need to see the doc or nurse again we'll be living in a post-mask era. Perhaps.

Onwards and upwards.]]>Health - MS2021-08-23T15:55:57+01:00https://awalker.org/Health/files/d297bc7e1a66695051a893ca918cab24-21.html#unique-entry-id-21https://awalker.org/Health/files/d297bc7e1a66695051a893ca918cab24-21.html#unique-entry-id-21Today I had a double MS day comprising a Copaxone delivery and a call from the MS Nurse. The delivery came as timed: it was expected to be between 1 and 3pm and it arrived at 1:45pm including a handy text to say I was next up (only kinda handy as for all you know the previous delivery could have been 30 miles away - I’m guessing that isn’t usually/ever the case).

The call from the MS Nurse came just before 2pm, and it had been scheduled for 2pm. It was a really short call. I confirmed I had nothing to report re changes with my MS and wasn’t experiencing any significant issues, as far as I could tell, with the self injecting thing. Confirmed I was rotating around 4 locations (left & right belly and left & right leg) and that I was making a note of the location each time (and that I hadn’t missed any scheduled injections). All in all straightforward.

She said she’d schedule the next call/appointment for 12 months hence. Obviously in the meantime I’d call the Walton Centre if something changed or I need advice.

Hopefully things will continue as is…

Onwards and Upwards.]]>Health - MS2021-07-26T22:30:27+01:00https://awalker.org/Health/files/f1d9dabe1b01bffbfc0039883f28c526-20.html#unique-entry-id-20https://awalker.org/Health/files/f1d9dabe1b01bffbfc0039883f28c526-20.html#unique-entry-id-20When I first got the diagnosis of MS (or at least after the time it took to get over the initial shock) I decided to walk regularly and I set a lower target than the “10000 steps” generally talked about in terms of keeping fit. It was multi reasoned, 1) to prove I could and 2) just to regularly exercise (it would be too easy to hide away in the house with a spurious excuse available on tap). And early on I was very much doing the amended target of 8000 steps most days; and occasionally significantly more.

Recently I have not been achieving this often at all for a variety of reasons. I think partly because I knew “I could” that reason to do it disappeared off my radar. I’ve had a couple of other issues which have stopped me entirely for a while including a dodgy foot and also a knee issue (neither MS related as far as I can tell) and then last week when I was confined to quarters with the ubiquitous ‘Ping’.

Since the start of the July I’ve only been above 8k steps seven times. That’s over a period of 26 days.

I’ve decided I need to get the regularity of achieving this original aim back up. Not be anal about it, but just to do it more often. I kinda think I can, but at the same time I’m aware that if I’m not doing it then I may not notice if and when any things go downhill.

This past week I’ve felt more “buzziness” in my feet and legs. It’s not necessarily anything to do with MS. For a start for half of last week I couldn’t leave the house and garden and so exercise was a little constrained. On top of this it was damn hot so dehydration may have been an issue. And lastly my prescription for blood pressure tablets lapsed at the wrong time (they get dispensed at a chemist which is shut for much of the weekend) so while I don’t think any feeling in my legs are likely to be due to stopping taken blood pressure medication for a few days, it is another factor to consider.

In any case the buzziness is nowhere near as bad as it was when I first had the “waist down” issues. Apparently temperature can be a significant issue with respect to MS (so much so that it was historically used as a diagnostic tool: they’d plunge patients into a hot bath to see how they’d react to the heat (presumably other than get burnt skin)) so maybe the heat we’ve been suffering from for the last week or two has been a contributory factor to this slightly returned buzziness.

For the last two days I’ve walked into town (about five miles) and these two days have been okay. I’ve got the walk done without any particular issues: they’ve felt quite tired the last couple of days when on the steps down through Everton Park. But that could be just normal fatigue towards the end of a four or five mile walk in the heat - as opposed to anything more “medical”. At the end of today I’ll have exceeded 10k steps on only three days this month: two of which will have been the last two days. It’s an hour and a half to walk into town and maybe I should simply schedule do it three or four times a week. It’ll get me exercise back up to where it should really be. And I can keep an eye on any obvious differences for how my legs - and the rest of me - feel e.g. maybe next time I go down the steps I’ll feel better as the heat will be less of an issue.

I think I’ll return to the aim to walk an average of 8k a day i.e. achieve 56k/week not worrying about days I don’t walk 8k as long as I do the extra steps on another day.

In fact after just typing that sentence I can see it makes sense to keep recording it (not that my phone doesn’t do that automatically anyway). So after each week I’ll put a total up my steps for the week… and woe betide it’s below 56k (clearly if one week is below the additional steps will have to go on “catch up” the following week - surely?). The last week of the month could get scary if I don’t keep up with the numbers early on. Then again if a month falls below… well, you get the picture.

Onwards and Upwards (in terms of step numbers at any rate).
]]>Health - MS2021-07-15T17:31:29+01:00https://awalker.org/Health/files/17c16a572112bab19fabc547c44a9d66-19.html#unique-entry-id-19https://awalker.org/Health/files/17c16a572112bab19fabc547c44a9d66-19.html#unique-entry-id-19Since starting on the Copaxone I have just been injecting either side of my belly. I am aware though that you should rotate the positions of the injection sites to reduce the damage done to areas of the skin and below. Many of the suggested areas are out of question if you live on your own: back or back of the arms etc. And while the guidance is probably conservative - and includes the people who are injecting on a daily basis as opposed to three times a week like I am - it was definitely worth getting into trying new places to inject. So for the first time today I injected into my leg. I have read how some people find it more painful and I thought it could be. After all there is a lot less fat to inject into than in your mid regions.

The first thing to do (once you’ve psyched yourself up to do it) is to change the setting on the auto inject pen. On my stomach injections it is set to “8” which I think equates - or thereabouts - to millimetres. With the reduced depth available to you in the front top of your leg I halved the setting to “4”. Then it is a question of pinching up the skin on your leg and pressing the auto inject pen as per the norm.


Ready for the leg

In actuality the pain was no more or less than it has been with the belly injections. So far, a few hours later, I have not noticed any more pain or swelling either. There is obviously a slightly raised area a couple of inches across due to fluid going in there. But there is no discolouration of the skin or background pain (by that I mean discomfort before I touch the area). Assuming nothing changes in the coming day then I will happily use my left leg for my next jab then continue to rotate the sites as left side of belly, right belly, right leg, left leg. Doubling the injection sites can only be a good thing.

I have read that some people do get problems with the injection sites after long term use and go away from using the auto inject to self injecting using the syringe and thereby controlling the speed you push the fluid in. I’m not sure about that at all. But I guess you cross the bridges you come to. So far so good though.

Onwards and Upwards,]]>Health - MS2021-07-01T09:09:03+01:00https://awalker.org/Health/files/1bc270d85db6ec4333c97b387d0c5968-18.html#unique-entry-id-18https://awalker.org/Health/files/1bc270d85db6ec4333c97b387d0c5968-18.html#unique-entry-id-18Hey, another Copaxone blog. Must be something wrong then? Nah. Just a note on how I’ve been finding it physically. I’ve been putting the jabs in without any problem so far (other than the very slight issue mentioned in the last blog). Thought it would be worth putting down how it has felt to me after the jab, so anyone starting up - or considering it - wonders how it will/should be (assuming I am in anyway “normal” (that seems a tad unlikely of course)).

I was thinking that I can feel something in the area of the jab (not from the needle; that’s fine). And not sore exactly just a little discomfort or something obvious but not concerning which I can feel when I move or stretch the area of concern. The relatively vague feeling lasts a couple of hours or so - and then becomes absolutely fine.

I spoke to my mate about it who has Type-1 diabetes and is jabbing himself every day four or five times. Chatting and it dawned on me that a) he’s used to stabbing himself daily multiple times - and I’ve only done it seven times so far and b) he’s injecting a fraction of the volume into himself that I am. I’m putting a whole syringe in (1ml) and he’s popping in whatever his calculated dose is at the time. But not one syringe worth.

So of course I can feel it in the area I’ve injected: there’s 1ml of liquid I’ve squeezed into the subcutaneous area of my belly so it’s going to feel a bit funny for a while before the liquid spreads out to wherever it has to go and visit.

Anyway, I hope you find this reassuring if you’re looking at or starting up. So far, so good. Onwards and Upwards!]]>Health - MS2021-06-20T11:39:31+01:00https://awalker.org/Health/files/bf168b70d2f8d137285ac89a7d8f8dd1-17.html#unique-entry-id-17https://awalker.org/Health/files/bf168b70d2f8d137285ac89a7d8f8dd1-17.html#unique-entry-id-17Yesterday was my 3rd Copaxone jab ever; and hence my second go on my own. Wonder if I’ll count them all? Probably not. Let’s face it, it should be just multiplying each month by the 12 jabs. It went okay. Apart from I tried doing it without using the booklet. Probably should have done it a few more times before doing that; rather than just the once.



I made one slight error; which I won’t make again. May have resulted in the needle being at a very slight angle from what it should have been. Certainly felt it a little more than last time when I removed it. And it looked a little out of kilter after I took it from my stomach (LHS). Put it a few inches to left from last time I used that side. The mistake was me taking the lid off the syringe before pushing the syringe back into the injector. My bad: I should have pushed the syringe into the CSYNC and then taken the lid off with its red top. Anyway I’ll live: And I’ve learned.

The strange thing with the Copaxone is that it is taken three times a week - exactly that and not every two days. So my next injection is an epic three days away. With electronic calendars it is easy enough to set up reminders anyway. Some people are on a lower dose but inject every day. I think it’s either 3 doses of 40ml or 7 doses of 20ml. Three doses seems best for me.

Onwards and Upwards (if slightly askew).

]]>Health - MS2021-06-16T08:03:00+01:00https://awalker.org/Health/files/a3eb65b41185acb539b2635a5457cf85-16.html#unique-entry-id-16https://awalker.org/Health/files/a3eb65b41185acb539b2635a5457cf85-16.html#unique-entry-id-16Hopefully come up with some more imaginative names for any further Copaxone related blogs. That said, maybe I wont need to do many more on Copaxone anyway: after all if things go smoothly with it then I wont be saying much about it. So fingers crossed I won’t get to Fast & Furious (or indeed Rambo) numbers.

The nurse came today after the delivery arrived yesterday morning. When the package arrived in a large plastic bag yesterday, taped up with contents to be put in fridge stamped on it, I was briefly alarmed at its size wondering how much of the fridge would be left for actual food and drink. But when I opened the bag the bulk of it proved to be the Yellow Sharps Bin and a blue zip case for the CSYNC auto-injector. The actual part of the package that needs to be refrigerated is just the small box of syringes. After all I only need to inject myself three times a week. So a month’s supply is just 12 syringes. The delivery included a CSYNC comes with a big thick glossy book, but like every device manual - be it an air fryer, a strimmer, a car, or a CSYNC auto-injector system - this is because it is presented in every conceivable language on earth. And there is only actual four pages that relate to the instructions in each language: and unclear instructions at that.

I had a read of the manual before the nurse arrived intending to be primed and ready to go; but the manual was confusing and I was soon of the opinion it was likely a lot easier than the steps presented in text form and that I’d be thankful for a nurse visit. It was pretty damn straighforward. The nurse also pointed out there was a fold away illustration inside the booklet which was much clearer than the text - though the inside of the booklet were not effectively pointed within the document. They’d have been better off just producing a glossy of the pictures presented in the inlay. A picture paints a thousand words and all that.

The nurse took out her own injection kit - filled with saline - along with a little padded device about the size of a bar of soap, to represent a belly or leg muscle and duly went through the entire process, before watching me do it for real.

It really was quite straightforward. I think. I dare say it’ll take me longer than it should the first few times doing it on my own, but I’ll get there.

The actual needle going in (set to ‘8’ - which I think equates to 8mm) didn’t hurt much. You notice it a little, but it is not of undue concern. I could feel it a bit later and there was a very slight reddening, but less than my arms were after the sunshine camping last week. And it wasn’t long before I couldn’t feel anything had happened there and the reddening had gone.

I chose to inject into my belly (a big enough target and easy to reach) on the left hand side. You are told to rotate the positions, so I’ll be right hand side next time. After that I may try a leg to see how that works for me (set to 4 or 6 instead of 8). I think you can stick to legs or belly as long as you don’t keep putting the needle in roughly the same place. Being only three times a week it’s less of an issue than it could be for a drug needed to be injected more frequently.

In summary: it wasn’t painful. It’s a little fiddly inserting the syringe into the auto-injector and then emptying and disposing the needle into the Yellow Sharps Bin. I’m sure it will quickly become second nature. It’s only a few hours after and I’ve not felt any issues to far, hopefully that will continue to be the case.

It was good news on the delivery front as the nurse said that they could deliver to a pharmacy for pick up from there. They’d asked about a neighbour on the phone when I last spoke to them, but a pharmacy is much more straightforward (as long as I don’t tell them to come on a Sunday and mess that up).

Anyway, so far so good. Onwards And Upwards. ]]>Health - MS2021-06-11T09:23:17+01:00https://awalker.org/Health/files/2e919adb73d8d5225c552e544b84e80c-15.html#unique-entry-id-15https://awalker.org/Health/files/2e919adb73d8d5225c552e544b84e80c-15.html#unique-entry-id-15Eek! The day is in the diary. The paperwork has been completed and the delivery of my first batch of Copaxone is scheduled for this next Monday. So I’ve got to clear a space in my fridge for the syringes.

As well as clearing a space in the fridge, I’ll have to tidy up. Because on Tuesday a nurse will come around for an hour or so to go through the process of injecting myself for the foreseeable future. Like I say... eek! In fact double eek!

But it will be good to get on it. And I’m sure it will become second nature to me before long. It will also be good to be tidier - even if it is for just a couple of days.

Onwards and Upwards.

PS apologies for the dubious use of exclamation marks in this tiny piece.]]>Health - MS2021-05-12T11:32:09+01:00https://awalker.org/Health/files/ae05a7a63bc35b6dc05ffdfbfe537352-14.html#unique-entry-id-14https://awalker.org/Health/files/ae05a7a63bc35b6dc05ffdfbfe537352-14.html#unique-entry-id-14Had my appointment call with an MS Nurse from the Walton Centre yesterday. This was a follow up/introduction call in the wake of the MS Neurologist appointment (Dr. Mills). The Walton Centre covers an area from Preston down to North Wales so I’m lucky to be only 1 mile from the Centre (if and when any actual visits are allowed rather than telephone or video calls). The four specialist MS Nurses at the centre cover 5000 patients.

As well as introducing herself and the team the telephone appointment comprised discussing where I was up to in terms of the relapse and broadly probing the extent of my knowledge of MS and clarifying things. She outlined how things will progress going forward with the Walton Centre who will be the specialists dealing with me. My GP is there for everything else, but for anything MS related the point of contact is the MS Nurse Advice Line at the centre. If there are any relapses I basically don’t bother my GP with things I’d call the Advice Line and a nurse will call back in 48 hours or so. The reason for the ‘wait’ is that generally nothing that changes should tend to be urgent, it’s all about changes and progression of the MS. There is also an emergency clinic at the centre if something occurs that requires investigating including anything that may induce a change in treatment. The GP will be copied in with any correspondence but will not be dealing with it.

We talked a fair bit about the medicinal side and Disease Modifying Treatments (DMT)–and obviously Copaxone in particular. According to NICE the entitlement for MS treatment is if the patient has had ‘at least two relapses in two years’: and I’ve had two in three months so will be put on treatment. The drugs get issued by the Walton Centre directly and not through a GP/prescription. They’ll get delivered to my home from a private courier so I need to be in for deliveries etc. I will also have a home visit from a nurse for the first injection to go through the injection process. The paperwork to arrange the drug will take a while, but I should be getting the drugs within two or three weeks. Exciting stuff, eh?

I understand that the injection device will be an ‘auto-inject’ pen like the ones people with diabetes use. The drug needs to be refrigerated, but it is recommended to take the drug out of the fridge a day before use i.e. not to inject straight from the fridge. The Copaxone will get delivered in one month batches in case there is any issue with the MS or any adverse reactions: if they delivered any more and in the meantime I was changed onto another drug then the stuff they’d delivered would be wasted. Makes sense. It can take around six months for the drug to get to the level it should so early relapses whilst on it won’t mean the drug isn’t working.

An MS Nurse will contact me in around six months, which I think will then continue ad infinitum whilst there are no changes to deal with. The Advice Line will be the main point of contact and allow them to keep track of things.

Usually after diagnosis the patients are invited to the Walton Centre to see the place, meet the Doctors & Nurses and be told about MS. Due to Covid restrictions these haven’t been happening for the last year. To date I’ve only met the neurologist at the time he gave me the diagnosis in the hospital after the brain and spine MRIs and I’ve not met the MS Nurses. I’ve spoken to a couple of the nurses now who have both been great and had a good video call with Dr Mills. In terms of MS I’ve been provided good information verbally and with literature and links several websites.

In summary, things are progressing well with the nurses, doctor and treatment advice and I’m more than happy with all that the Walton Centre has done for me so far–even without having gone there (other than for the infamous Lumbar Puncture).

Onwards and Upwards.
]]>Health - MS2021-05-05T12:44:32+01:00https://awalker.org/Health/files/8ee8d414ef4706df7cd75692ccc5b335-13.html#unique-entry-id-13https://awalker.org/Health/files/8ee8d414ef4706df7cd75692ccc5b335-13.html#unique-entry-id-13Not on the drugs yet. I suppose there’s no immediate rush but it would be good to get started and run with it. Literally perhaps.

Yesterday I received some information on MS including a pamphlet on Copaxone (glatiramer acetate) which will be my first MS drug. Many people end up on one drug for some time (often years) before changing to another and another. I dare say that is likely to happen to me too. Besides, the advances with MS seem to be happening quite regularly. It could be one tablet that tastes of strawberries and cream by the end of the decade. Possibly.

I’m not looking forward to the injection part of it. It would be very strange if I was. The recommendation is to rotate the injection points through up to seven different parts of the body. These are: the belly, the upper thighs, the back of the arms and the upper hips. Repeated injections in the same place should be avoided for at least seven days. The pamphlet says that for the upper arms - and I dare say the hips - it would be best to do it with someone else there. Which is all well and good if you don’t live alone. Anyway with only an injection three times a week I guess I can just stick with the belly and the thighs. I can’t miss any of them.


Injection areas (not sure why the figure is about to draw a couple of revolvers)

Not yet sure how the ‘three times a week’ thing works. Every two days with a day off? Or is it every two days so that it’s three times a week the first week and then four times a week? I guess when I speak to the nurse next week (yep, another call) I’ll learn all that.

I can’t start taking Copaxone until a) it’s actually prescribed for me and b) a nurse shows me physically how to do the injections. That is not going to be a fun appointment is it?

Onwards and upwards.]]>Health - MS2021-04-26T14:01:59+01:00https://awalker.org/Health/files/3a34a03d29dd53a3b604b18606896208-12.html#unique-entry-id-12https://awalker.org/Health/files/3a34a03d29dd53a3b604b18606896208-12.html#unique-entry-id-12Had my first post diagnosis Doctor appointment with the Neurologist at The Walton Centre last week. Went okay. It was a video appointment. You need to log in to the online Waiting Room 15 minutes early. Was in at 11am for 11.15, but doctor didn’t log in until gone 11:30. So the Waiting Room was definitely realistic. The verbal message keeps repeating like you are on an automated phone, ‘We know you are waiting. Someone will be along shortly...’ or something like that. Needless to say the longer the wait is the more you think... “Am in the right Waiting Room?” Visions of the doctor logging into another Waiting Room and thinking you haven’t turned up are inevitable.

The doctor confirmed MS - obviously - from the L.P. results. We spoke a bit about my current situation and he was happy things seemed to be stabilising and/or improving.

I’ve not blogged for a while on this so the doctor now knows more about it than any blog followers. Basically the current situation is that my legs - and particularly my feet - have been improving (not aesthetically just in terms of sending messages to my brain about things). At the start of this current situation - or relapse - my feet and legs couldn’t tell the difference if I was walking on sand, grass, or concrete. They couldn’t tell if I was walking over the knobbly concrete pavement used for blind people for instance. Now I can. The feeling in my feet is much better. As said previously the nerve-message to brain problem thing moved north and it became my torso, arms and hands that became the problem; in similar terms such as pins & needles, numbness, feeling cold and the damn MS Hug. The Hug is barely there now: when I first had it when I lay down it felt like I had a pile of hardback super tomes stacked up on me. Now it’s more like an old 2000AD comic. I can take that. The pins & needles don’t appear to be getting any worse: I can just about strum an open guitar chord. But if my fingers wander I may not notice till I’ve strum through a few discordant moments (many would say, “no change there then”).

Then we talked about medication options. Basically the two main open to me at the moment - whilst my issues not too bad - are a twice daily tablet (Dimethyl Fumarate) or a self administered injection every two days (Copaxone).

The tablets work partly by reducing the white blood cells etc and require regular blood tests: six times a year. They’re not exactly sure how the things work; let’s face it they they don’t really understand MS. The injection meanwhile comprises a synthetic myelin compound which, in theory at least, trains the blood not to attack the myelin. No regular blood testing required - and much less in the way of side effects (the relatively common side effects for the DF drugs sound much worse that’s the current issues I have).

In theory the DF reduces the relapses by up to 40% (or at least extends the time until the next one), whilst the injection is at bit less effective at approximately 33%. The side effects from the oral drugs sounded too iffy and common. Although the injection option was, well: an injection, it sounded better to me. So I’ve opted for the Copaxone route. Not on it yet but should be in the next few weeks.

There was nothing outstanding that came up in the appointment. Random unpredictability is pretty much the theme of MS. But that in itself was good; in that there were no surprise bad news packages for me.

Another thing that I may not have touched on before is that MS can affect the muscles around the bladder and basically give you less capacity. This has been the case for me, but not majorly so - and it’s not been getting worse (probably a bit better if anything). Whilst I may be bursting when I wake up I’ve not had to get up the night to go. I know plenty of people who need to get up in the night for a wee dewatering exercise who don’t suffer from MS so I can live with it.

In summary, the current relapse appears to be stabilising and indeed improving. The promise of drugs to reduce the instances is a good positive. Will get back to work imminently - but defo have an eye out for a better job.

Onwards and upwards.]]>Health - MS2021-04-07T13:41:45+01:00https://awalker.org/Health/files/9524a3b0c399d59a532eb3c61a19c777-10.html#unique-entry-id-10https://awalker.org/Health/files/9524a3b0c399d59a532eb3c61a19c777-10.html#unique-entry-id-10It's only been a month since my MS diagnosis but if feels like several months have passed. I haven’t done an MS Update for over a week now. That’s largely because there isn’t much to report in that things are pretty much the same. I’m still fine moving around and doing 10,000 steps a day and all that. Last week I walked over 40 miles, which is pretty good. I have no pain or other symptoms, there are no signs of things getting significantly worse - so perhaps it's happy days.

The main symptoms I'm having at the moment are numbness and tingling to varying degrees. When sat or lying around I don’t notice it too much. But to touch the skin you can feel it very obviously. The infamous, awfully named, MS Hug doesn’t seem too bad at the moment. But the other side of this Dysesthesia is a feeling of extreme cold. This is constant and affecting my arms, legs and torso and is not down to touch. I’m not used to feeling nesh and really want this to go away. But I suppose that at the end of the day feeling bloody freezing isn’t the end of the world when there are so many worse things it could choose to do.

Onwards and upwards (and bring a jumper).]]>Health - MS2021-03-25T18:58:59+00:00https://awalker.org/Health/files/6bba4694adaa243f7126c8ec89002c6f-9.html#unique-entry-id-9https://awalker.org/Health/files/6bba4694adaa243f7126c8ec89002c6f-9.html#unique-entry-id-9

It was a big day for me yesterday post diagnosis. I spoke to an MS Nurse from The Walton Centre. It’d been just over a fortnight since my diagnosis and it’s going to be another 4 weeks until I see the doctor. That appointment will be a big one too. But this one really was just as important in terms of settling my head. As I put on a tweet the day before I have felt in Limboland, not knowing what it all means and what the future may have in store; or what I should or shouldn’t be doing etc.

Anyway we had a good chat. She indicated I have Relapsing Remitting MS, which is the most common sort (85% of MS is classified as this). The current episode and future ones are called ‘relapses’ even if it is the first one. They do have a problem naming some things (MS Hug: my arse). Other MS types are Primary Progressive and Secondary Progressive.

Being in Limboland people obviously are faced with numerous fears, wrong assumptions and a myriad questions. When it came to the call my questions were essentially nebulous and I knew most couldn’t be answered. The nature of MS is that it is a disease tailored differently to everyone. There is no way to say when or how it will progress. You can make guesses at approximations. But there’s no way of saying by such and such a date x will happen and then y will follow.



Even looking at ‘average’ cases is pointless. By its very definition many will be better or worse off. It’s frustrating of course. But then maybe me lying between the glass half full and the que sera sera category it’s not too bad for me.

One of the biggest fears about MS is mobility issues. If you look at stuff about it so many photos and studies show people in wheelchairs. Be them happy photos or not it is inevitably daunting. But chatting to the nurse this scenario is a far from inevitable outcome. Around 70% of MS sufferers do NOT require walking aids and many of those that do may find it to be cane (everything comes back to Dr Gregory House). The fact that 30% of people do require such assistance is only one part of the equation too: the other side is ‘when?’ I mean if I definitely get to a point I need walking assistance that is one thing, but if that is in a few decades time.... well, que sera sera. The point is at diagnosis (i.e. around now) the fear is that these things are a) inevitable and b) around the corner. In reality they are neither.
Just having the MS Nurse chat has helped a lot.

She couldn’t really talk about treatment options per se. That will be up to the doctor to look at once he’s gone through the assessment of all the results and seen how I’m doing. But the fact is that there are treatments - no cures, but treatments - and these are improving all the time. The options are called Disease Modifying Therapies (DMTs) and of course as the MS varies from patient to patient so will the DMT options. It will be interesting to see. The point of these is to slow down the appearance of relapses and/or to speed up the recovery period from a relapse.

Even without treatment relapses will tend to go in their own time, although they may not fully bounce back to where you were before it started. So it may be that in a few days, weeks or months, this ‘relapse’ has gone and nothing remains of it. I can but hope. But there may be a residue that doesn’t fully recover. In that case I may get to keep some degree of numbness, pins and needles or just feeling damn cold. Will have to wait and see.

But when would the next relapse be? Indeed the $64,000 Question. And the answer is predictably: unpredictable. It could be months away, it could be years away. And it could be something else entirely too. Like Forrest Gump’s box of chocolates: you’re never gonna know what ya gonna get.

One of the best outcomes of the conversation with the nurse (apart from she inadvertently kept saying things that tallied with what I’d said in my blog or in tweets) was her pointing me to a page on the MS Society website. There is a lot of information out there on MS, but by its nature the vast majority won’t be relevant to an individual. And certainly whilst you are sat in your chair in Limboland the last thing you need is to start going down rabbit holes which may take you to totally unnecessary, and potentially very scary, places. I was well aware of the diseases variability and what effect that would have on the interpretation of general information, so have to a large extent being avoiding the internet information out there. It would be like going into the British Library knowing there were two or three books that could help you there, but not having any references: futile and demoralising. But my nurse pointed me to one specific page which was exactly what I need at this time. The bullet point questions and answers were great, but best of all was the pdf booklet download ‘Just Diagnosed - an Introduction to MS’



The booklet is clear and concise and gives a fabulous overview of the disease and an outline on the way forward and DMTs etc. Basically, there is good information out there, but it really helped being given the correct reference for it
If you are interested in it you could do worse than having a peek at it. Until two weeks ago I knew nothing of it. Other than having heard the name I wouldn’t have been able to tell you a thing about it. I know a good deal more now and I’ll get to find out more in a months time. But just don’t say I’m on a journey.

Speaking to the MS Nurse yesterday was fabulous - along with getting some decent, appropriate information from the MS Society - I’ve felt a great deal better since. I may still be in Limboland until I’ve seen the doctor, but at least someone has turned the light on and really the place isn’t as bad as it seemed in the dark. Onwards and Upwards, people.

Links:

The Walton Centre
MS Society
]]>Health - MS2021-03-24T16:19:44+00:00https://awalker.org/Health/files/fe67ab432a613dc765039adda20be45d-8.html#unique-entry-id-8https://awalker.org/Health/files/fe67ab432a613dc765039adda20be45d-8.html#unique-entry-id-8It may be a month until I see my doctor but I at least have an appointment made with the MS Nurse tomorrow afternoon. Hopefully that will give me some answers and therefore some peace of mind. At the very least it will move me further along within the limbo I feel I'm in. Maybe even if it's just moving me from by the limbo entrance towards the limbo exit it will at least make me feel better.

Passing on the information on how I am now, as compared to a fortnight ago, will help their assessment I'm sure, but the main things for me is to get some information back: to see what I should and shouldn't be doing (if anything) - including exercise and work; are my current issues 'an episode' and are they likely to disappear as randomly as they arrived; what are the possible ways forward for treatment (if any); what, if anything, can be said on the expectancy for how things may change - and the speed of that; and, anything I need to be looking out for/reporting on.

The main changes over the last couple of weeks have been that the numbness/pins and needles have changed from being just my legs, from the waist down, to my torso - and to a lesser extent my hands and arms. I think the torso thing is largely felt through what they call the 'MS Hug'. It's a misnomer really as a hug is a nice thing. This is far from it. It's a permanent feeling of compression around parts of the torso, such that when lying down it feels like I've got a pile of heavy books sitting on my stomach. It really is quite disconcerting.

The other effect of the numbness is virtually my entire body (other than my face) feels freezing. Now, even though part of my body may feel warm to the touch, it feels very cold to me. It is the polar opposite of what I am used to. Usually I've more likely to have suffered from being warm. I've never been nesh.

Those are the negative changes. But from the positive side, the legs have not got worse. For the last eleven days I've been walking on average over 11k steps per day - and not felt any ill affects on my legs after the longer walks. I've also had no issues with my eyes. I'm a bit worried about the pins & needles now affecting my fingers a little; particularly with reference to playing the guitar in the first instance. But so far it has not got me any better or worse at the guitar than I was a month ago. Fingers crossed (while I can do that).

Roll on tomorrow afternoon.]]>Health - MS2021-03-22T13:36:32+00:00https://awalker.org/Health/files/ec874a8eba34f1192c542561983153f7-7.html#unique-entry-id-7https://awalker.org/Health/files/ec874a8eba34f1192c542561983153f7-7.html#unique-entry-id-7Had a bit of a nightmare yesterday. I’d been looking forward to a doctor’s appointment with the MS doctor following my diagnosis two weeks ago. I’d had the lumbar puncture a fortnight last Friday and the lab results were expected back in about two weeks. Last week I got a letter saying I had an appointment for the 23rd which fitted in with that.

I really thought it would be great to hear from the doc what the prognosis is and what the treatment options are, if any; some kind of map for the future, however sketchy.

Unfortunately when I checked the letter yesterday afternoon for the time of the meeting it dawned on me that my appointment was not today but 23rd April - and worse still, it says Thursday, which should have been a big giveaway. I was so annoyed with myself. I’d put 2 and 2 together seeing ‘appointment,’ and '22', and knowing the LP results were due in I’d filled in the gap with ‘March’ - despite the letter clearly and unambiguously stating April and Thursday (when 22nd March is a Monday). It was a really deflating moment. As I feel I’m in a vacuum: knowing the diagnosis but not knowing what it means. Especially as the physical area of the effects have expanded. It fair took the wind out of my sails.


The subtle clues hidden in my appointment letter (doh!)

So I’ve another four and a half weeks to wait until I see the doctor. I’m sure that the meeting will be great but I’m a little bit lost in the interim. Should I be working or avoiding it? Should I be walking or doing exercises? Are there any pills I should be taking (or definitely not taking)?

I’m going to sketch out a few facts and questions now, and then I’ll try speaking to one of the MS nurses who should be able to help - and hopefully put my mind at ease. I think they aim to get back to patients within a day or two when you give them a call.

I’m going to continue my daily aim of a minimum of 8k steps while I feel it’s doing me good; for the last week I’ve averaged about 11k steps per day. And I’m hoping to get back to work soon if that is what is advised and I feel up to it.

In the meantime people, a little bit of advice: read your letters/emails/texts twice. Even put them down and go back to them later. Don’t fill in none existent blanks in your head with assumptions. As everyone needs to learn in life: ‘Assumption is the Mother of Fuck Up.’]]>Health - MS2021-03-17T10:19:17+00:00https://awalker.org/Health/files/21f096ed290578cc4450eb7e3fb091ee-6.html#unique-entry-id-6https://awalker.org/Health/files/21f096ed290578cc4450eb7e3fb091ee-6.html#unique-entry-id-6Since my diagnosis of MS less than two weeks ago I have been conscious of my movement and the requirement to keep some miles in those legs to keep them going - even if I've nothing in particular to do. My standard aim for those pesky 'steps' prior to MS was 8000 a day. With work I was always doing between 12 and 17k steps, and on days off in these Covid days a lot lower (no pub crawls to walk). The average though would be well over 10k. I'm going to keep the aim at 8000 now and I don't feel any reason to change it. Indeed it may be more important than ever.

I decided to go on a walk yesterday with the aim of exceeding 10k and I did easily - finishing on 15k. The main thing was a long walk into Liverpool from home taking in Anfield Cemetery, Anfield Stadium and the walk down to the Adephi via Everton Valley Park. The walk was about 5 miles.



The walk took me along the East Lancs and Walton Road before I ducked into Anfield Cemetery, as it's always nice to walk through where all the dead people are, and then on past Anfield. I was a season ticket holder back in the 1980s and in more recent times a Priority Ticket Scheme member, but I haven't gone to a match at Anfield since they built the fantastic new stand. God it's enormous.





After Anfield I decided to walk on, trying to get some more miles in. Thought I'd go to Everton Valley Park for the vista over Liverpool. The skyline along the Mersey looks great from there. In the end I decided it was al downhill from there into town so I'd continue and get the 17 or 19 back. It was a good call. Met a nice bloke walking his dog who chased after me to tell me my laces were undone on one of my trainers. I couldn't hear him with my headphones on. I thanked him, as there was no way with my current lack of feelings in my legs and feet I'd ever have felt them being loose. Got chatting to him, and despite his Everton hat he was a sound bloke. Explained about my numbness and he told me about his son dying at 19 and daughter at 24. Bloody hell. There is always someone else worse off out there isn't there. Had a good chat about all things cheerful, and football (which is a mixed bag for both of us at the moment).



Town was an absolute mess with so many roadworks around the centre. Hope they are timed to be sorted by the time everything has opened up - if not it is more disaster for the companies that have been shut for months. Sod's Law and bad planning dictates that the works won't be completed in the next couple of weeks. I saw hardly a workman anywhere along the hundreds of metres I walked past. Fingers crossed though.



Didn't fancy walking back - it's uphill. So hopped a No.19 and I was sorted. It was a nice day and a good walk. It's good to know I can walk five miles with no ill effects. Though my feet were sore.

Onwards and upwards.


]]>Health - MS2021-03-12T12:18:48+00:00https://awalker.org/Health/files/7d38668caf702d29ed71cf2cb1764668-5.html#unique-entry-id-5https://awalker.org/Health/files/7d38668caf702d29ed71cf2cb1764668-5.html#unique-entry-id-5A week yesterday I was told I had MS and at this time a week today I was leaving the Walton Centre after the excitement of a Lumbar Puncture. It's been a funny week or two. I've had one non-funny turn of blind panic the other night, as described in my last blog Paranoid Andrew, but otherwise I've been okay.

Getting back to putting some distance in my legs, sometimes only walking up and down the rooms of the house. I walked 3500 steps on Wednesday and then aimed to double that yesterday (which I did), which is nothing compared to what I'm doing when at work - generally at work I do between 12 and 17k steps. At the moment I am assuming I'll be back at work by the end of next week if I continue to get my walking numbers up. If the current outbreak or episode or whatever such a thing is called remains as 'just' being some numbness in the legs and feet then I think that is doable. Fingers and toes crossed - though I won't be able to do that with my toes (or at least I wouldn't notice).

Expecting to hear from the Walton Centre about an appointment with the Doctor next week to go through the LP results and what will happen from then on.

This week then, in addition to walking each day, I'm looking at doing a (very) little DIY and some writing. Need to get my spare room sorted better for working in and/or playing the guitar.

Onwards and upwards.

Oh, and I did buy a pair of slippers. My bad.]]>Health - MS2021-03-09T13:18:21+00:00https://awalker.org/Health/files/ac7e4b714e2d0143098f20c00fab095a-4.html#unique-entry-id-4https://awalker.org/Health/files/ac7e4b714e2d0143098f20c00fab095a-4.html#unique-entry-id-4Didn’t have a good night last night. My legs had stiffened up significantly over the last couple of days and got more fatigued. It feels like I’ve got tight knee supports on though I’ve got nothing around them. A couple of spots around the waist have now felt the same. Nerves passing wrong messages again.

The night hit a low point when I thought I may be in the house a lot more in the future and could therefore do with a pair of slippers. Slippers!! My god.

With the different feelings in the legs changing quite quickly over the last few days my paranoia was briefly full on last night that it would continue on a rapid spiral and by the middle of the week I wouldn’t be able to walk at all. A little scary. Ok, more than.

On reflection, which included some early morning reading of the NHS website, I’ve kinda dispelled that now. Yeah of course things could get worse, but not that bad. Well not by Wednesday anyway.

I’m trying not to look at too much stuff out there on the subject. Yesterday afternoon I made the mistake of looking at a video made for MS Awareness month (or week, I’m not sure). It was a highly polished American production and showed various sufferers shouting out how they didn’t let MS win, they all had pretty severe issues and whilst I was very happy for them, the whole shebang did nothing for uplifting me. It seemed simply to be ‘it’s bloody awful, but look at me. I’m happy!’ - and didn’t say anything about the range or progression of the disease for most people. I think it was looking at this that got to me later in the evening - so much for awareness, or positivity.

But it’s so variable and difficult to predict there’s not much point in me worrying about where I’ll be in week, month or year one. Or how damn happy it will make me.

I’m glad I looked at the NHS website this morning. It’s made me feel a bit better.

Again I’m gonna try to continue to avoid general research until I know MY situation, hopefully following my follow up at the Walton Centre. Any future research will be totally UK based - I don’t want to see a single cheerful American telling me how good they feel despite the awfulness. I dare say I’ll have good days and bad days, and I’m expecting most to be good. But I won’t be starring in any glossy videos telling you about it.


______
PS it's always Andy, but Andrew scanned better for the purposes of the title.]]>Health - MS2021-03-06T14:17:47+00:00https://awalker.org/Health/files/1284b943a1c6f05669208f6b0c3d55be-3.html#unique-entry-id-3https://awalker.org/Health/files/1284b943a1c6f05669208f6b0c3d55be-3.html#unique-entry-id-3This week I was in Fazakerley Hospital for two nights/three days, and then in The Walton Centre as an in-patient. I was looked at by some great doctors and nurses. The nurse who looked at me at A&E was particularly excellent. The Covid brain skimmer was eye wateringly scary, but efficient. Even the food and drink was really good: with the exception being the "coffee" - and maybe the portion size ;-).


Fazakerley Hospital - the return to the 9th Floor

The nurse who performed my Lumbar Puncture in the Walton Centre was brilliant, and the initial involvement from the Centre has been really good - and I'm sure that will continue.

Met a really nice woman who worked at Fazakerley and the Royal who has written a book, due out soon, on her experience with breast cancer. Had a nice chat with her. I'll definitely be buying her book when it comes out; 'Bald, Brave & Bloody Beautiful' by Danielle McDermott. And better still she's related to a former Liverpool great too: Terry McDermott. Cool.


The Walton Centre

The biggest negative issues I had was; 1) sleep, which was incredibly difficult due to myriad issues with other patients and the noise from a variety of machines, and 2) my phone - I brought multiple plugs and a full battery pack with me; but I picked up the wrong cable for the phone. A true schoolboy error on my part. Can't really complain about either of these things; particularly my schoolboy error. The wrong cable mistake will never ever happen again. Hopefully.

Not sure whether I'll be writing more than the few blog things about this new part of my life, but maybe I'll get some new storylines for some fictional stories. Hopefully this blog will continue to be much about music, writing and beer rather than becoming a health log. That's my intention anyway; that said if you want to read about this last, very eventful, week then look no further that the previous post.

- PS I'm hoping not to have a reason to write another 'health' only blog for the next week or so. Fingers crossed.]]>Health - MS2021-03-06T13:17:05+00:00https://awalker.org/Health/files/35a737a76dd266656c9c2fe2a163c126-2.html#unique-entry-id-2https://awalker.org/Health/files/35a737a76dd266656c9c2fe2a163c126-2.html#unique-entry-id-2After four days of either being in hospital, or going back for tests, I’ve got a doctor free day. Yippee! So what’s been happening folks?

This week has been a bit of a kicker. After two weeks of numbness and tingling in my legs and feet the only test result I had come in was a low folate in a blood sample last Friday. By Monday I had not been able to speak to my GP so did not know whether this was supposed to be the reason for the issues with my legs, or something else completely unconnected. On Tuesday I tried again with the GP, on the phone from 8:30am but didn't get through until 9:30am - of course the doctors were all fully booked up for calls or actual appointments by then. Sometimes calling for a GP appointment can be as exciting and as fruitless as trying to get a festival ticket. The receptionist suggested that I try the eConnect method, where you fill in an online form and they reply by email to your query. Unfortunately when I tried filling in the form it wouldn't let me submit as it said that it said my issue was urgent and I must call 111 (it also does not send the information on to the GP at that point).

On 111 and after twenty minutes or more chatting to them it got to a point where they said they would call me an ambulance. Eek! Meanwhile I had the plumber working on my pipes (not a euphemism). The woman on 111 then told me the waiting time for an ambulance (which I was confident I didn’t need) was hours. She suggested getting a neighbour to take me to A&E (a neighbour during a pandemic?), and told me not to get a bus (it’s just two stops to the hospital).

Needless to say, after the plumber finished with my pipes (still not a euphemism), I packed a wee bag (again not) - just in case I’d have to stay over - and headed up to A&E... by bus.

After a long time looking at me - scratching and not scratching my legs, and taking multiple bloods - it was time to get a Covid test. I think she took a piece of my brain out with the sampling. It was the quick test: Negative. After the nurse consulted with a doctor or two it was decided I needed an MRI (which I was supposed to be getting after the Xmas issue and was sure would answer some questions). It couldn’t be done until the following day though, so I needed an overnight (if I’d not stayed in I was told they would be unable to put me forward for an MRI for quite a few weeks). As I was straying in I required a second (laboratory) Covid test. so another lump of my brain was pulled out though my nose.


I've found there's wifi (though my phone is dead. REM: take right cable next time)

Oh god, I’m rambling, and only a few hours into my three days in the hospital. At this rate it’d take ages to go through my three days.

Let’s rush it out then: on Wednesday evening I was subjected to the horrific experience of an MRI scan of my head and then my spine. Loud doesn’t come close. I think it was circa 50 minutes of hell. At one point I became worried about the titanium rod in my right arm being at least part steel and therefore getting ripped out of my arm. Scary. And did I say it was loud? It was VERY LOUD!

Because it was late in evening of course I wouldn’t get the feedback until Thursday. So it was another night in. I was worried about a brain tumour or something. I mean my legs are doing what I want them to. If I want to move either leg or foot it’ll go where I tell it. They just doesn’t send the clear feedback on to my brain as to how they feels. Something has cut through a cable and is disrupting clear communication.

I didn’t get the MRI results until Thursday afternoon (though before the report came in a doctor tried to mislead me in the morning. I don't now why he came to talk to me before the report was out!? - I’ll leave that there though). Finally though a neurologist, Dr Mills, and two of his young colleagues, came to talk with me: it was almost a Gregory House four man team.

Long story short, the diagnosis: Multiple Sclerosis (MS). Or, as I’ve mistakenly said a couple of times, M&S.

They suggested that they could do a lumbar puncture (or Spinal Tap if you prefer) the next day if I was up for it. As that could firm up the diagnosis: unfortunately there is no simple 100% test for the disease. It is a combination of clinical diagnosis with probability analysis and fingers to the wind. Or something like that. With the LP they take spinal fluid and can look at what’s in it, including viruses, macrobac, and lots of bits & bobs that can act as indicators for MS. In the meantime there was no need to remain in hospital thankfully.


At the bus stop on the way for my LP

So I got home on Thursday evening - so, so nice after two nights in hospital (how does anyone get any sleep there?). Got the call on Friday at 9:30am to come in to the Walton Centre for 11am for the LP. I was in and out in no time. I actually left home at 10:30 and was back having a coffee by 12:30. I’d been a bit nervous about the whole syringe in the back procedure, after seeing far too many bad examples of it on the telly. But the LP was undertaken without me feeling a thing; I've given bloods which have been more painful, and I've never had an issue with bloods (ie. that ain't painful either). The nurse was obviously bloody good at Lumbar Punctures - and the patient was obviously amazing too.

M&S: not good news at all. But ultimately it is better to know than not to know - I wish I could have had the MRI earlier: I mean I don’t need to worry about a brain tumour now, do I?

I’ve got a big learning curve. MS is an odd disease. It is one of those auto immune things where your body attacks itself. The MRI showed various bright points on my spine and in my brain where there was inflammation. These are spots where the nerves are being attacked and stripped of some of the myelin coating. It is these damaged nerves that stop doing their job and sending my brain bits of handy information (like is it hot or cold, hard or soft, sharp or smooth?). It's pretty difficult to know how things will progress and what treatments can work for different aspects of it. I mean once this episode is over and I'm dancing again (ok, not dancing) it could be months, or longer still, until a following flare up. And next time it may not be my legs. It could also be very soon. It could be something and nothing, or something worser. Basically the way it impacts seems totally random.

I'm quite ancient for the diagnosis: normally it first shows up in people between the age of 20 and 40. Maybe I've had it for decades and it hasn't done anything to me until now? Maybe I've been lucky in that respect. Of all weeks, what a week to get the MS diagnosis. Yup, March is MS Awareness Month. Well I guess I'm aware now.

The crazy thing is I actually feel very well - and long may that continue. It's going to be a case of taking each day as it comes and seeing what M&S has in store for me. This is not just numbness, it's M&S numbness. This is not just freaky, it's M&S freaky. For now though I have to wait a couple of weeks until I hear back from Dr Mills on the findings from the LP. The Walton Centre have already been in touch to say their MS nurses are there for me if I need to talk to them at all. It was nice and reassuring to hear from them without me calling them.

Anyway, onwards and upwards. And I really can't wait for the first real ale pub crawl of 2021. ]]>Health - MS2021-02-28T18:00:00+00:00https://awalker.org/Health/files/8c51ec8dbd9840a322bcce438a0c8a6a-1.html#unique-entry-id-1https://awalker.org/Health/files/8c51ec8dbd9840a322bcce438a0c8a6a-1.html#unique-entry-id-1This week I've been kind of waiting to recover from whatever I am suffering from - or maybe have it identified so it can be dealt with. Was hoping to get at least a date for the MRI, but there is no sign of that yet. The nurse who volunteered to take my bloods did so on Tuesday, which was great - it wouldn't have been taken until next week otherwise, which would have pushed things back another week, if I'd had to wait for sampling from one of the blood centres.

The taking of the bloods was fun: in that she struggled to get a vein and had to go for a second attempt. When I had tests at the start of the year the nurse commented at how easy it was to take the bloods. I think it has to be something to do with my sudden bout of everything being 'unusual'. Hoped that the results would be sorted by Thursday or Friday. As it was whilst I was chasing the results by phone on Friday afternoon the doctor, who was off, sent me a text as the the bloods had come through. Apparently they showed I was deficient in folate. I won't know until I see the doctor how likely it is to be the reason for my current issues or a side show discovered whilst investigating it. We shall see.

The fact that my nerves are fooked from my waist down to my toes - and that hasn't changed in the last week - seems a bit over the top compared to some of the typical symptoms of folate deficiency. As it is the feelings down both legs on all sides are messed up. The feet have strong pins and needles now and it is less like walking on soft mattresses when I am out for a stretch and more like walking on broken mattresses. Other than that had a bit of dizziness but nothing major. Of course that may have been something and nothing, now every little thing I feel comes with a 'is it a symptom' question. I'm also wondering if I've had weight loss or not. I don't weigh myself so I have no records to follow - all I know is my jeans are very loose. But that may be because I'm around the house without a belt on more. Maybe I should take some weight measurements and see what follows.

Been taking the folate pills since Friday. Not sure how quickly that will do anything, or indeed if it will do anything significant anyway.

For now I've got to see if I can get to see the GP early this week to discuss. I'm not sure that the folate deficiency is the cause of my current issues. I mean it is not that unusual an issue and yet the GP and the neurologist both thought the symptoms were very unusual - and looking at the list of typical symptoms of a folate deficiency:

• weakness
• fatigue
• trouble concentrating (or something like that)
• headache
• bloody irritability
• heart palpitations
• sores on the tongue or mouth
• a change in colour of skin, hair or fingernails (I may be a bit greyer?)
• shortness of breath.

…well I don't have a single one of these.

I need to cross my fingers that the MRI can get sorted so that it can do its job in looking for other internal issues. Fingers crossed for the MRI soon. In the meantime it would be nice to simply wake up with the legs feeling good and everything to have moved on as if by magic.
]]>Health - MS2021-02-22T20:20:24+00:00https://awalker.org/Health/files/67b0fa21783e9edf40f672c175d341cd-0.html#unique-entry-id-0https://awalker.org/Health/files/67b0fa21783e9edf40f672c175d341cd-0.html#unique-entry-id-0After years of not going to the doctors and only suffering from the odd episode of gout in one or other of my knees (treated with ibuprofen and time - it is a strange disease in itself) I find myself going to the GP again.

Before Xmas I had the whole numb on one side of the face thing, followed between Xmas and NY by visual issues. Putting the two together the GP told me to go to A&E as it sounded like I needed an MRI to look into it. At A&E they decided the numb face thing was shingles and the visual issues were down to Labyrinthitus (though they saw no evidence of that, and there was also no pain or rash associated with the ‘shingles’).

Since then the numbness of the face disappeared and the visual issues cleared up too. I went to an ophthalmologist department and they told me my eyes were alright though they weren’t sure what had caused the issue in the first place. Both the ophthalmologist and later two of the GPS discounted the Labyrinthitus diagnosis.

I was better. But I was put in for an MRI to box things off and see if there were any reasons there that they could identify that would cause the strange no pain/no rash/no other damn symptom issues. The date for the MRI could not be given, but it was thought it could be in the order or six weeks or so.

So in the meantime I was okay and back at work. No problem.

Then last week came along with a new sideswipe and yet again ‘unusual’ symptoms. Basically numbness was the main symptom, but instead of it affecting half my head it inflicted me from the waist down. Pretty weird and maybe a bit scary - I mean if it was numb one day what would it be the next day, or the day after that?

Got through to the doctors eventually and the receptionist told me to call an ambulance. I thought that sounded a bit OTT and couldn’t work out quite why. But on reflection, at the time I was worried the odd symptom was maybe a side effect of the Amlopidine they have me on for elevated blood pressure, I may well have said something along then lines of ‘I can’t feel my legs and I think it’s the drugs I am on.’ So maybe she thought I was a druggy in the process of ODing. You’d think they would be used to people referring to pharmaceuticals as drugs in a doctor’s surgery? Maybe she should have asked me to verify what I had taken. Lol.

In the end she talked it down to getting the GP to give me ‘an emergency call.’ Three hours later the call came through and I was told to come in. Chatting about the issue and then testing if I could feel the difference on my legs between cotton wool and being stabbed ensued (I think I could). The doc concurred that the issue was highly unusual, and that it wasn’t my due to greedy drug habit. He said he’d call the 'neurological helpline'. Unfortunately the helpline operates between the hours of 11 and 1pm. So it would have to wait until the next day.

I walked from the surgery to the chemist to pick up my Amlopidine; which I’d put off getting until I knew whether that was the issue.

Walking is weird. My legs at the moment (and long may it continue) are working fine to a point. The weirdest thing is as there is numbness for the full length of my legs and pins & needles in both feet, wherever I walk and however long I don’t feel it properly. The closest description I can think of is that it feels like I’m walking on a continuous row of mattresses. Which may sound nice, but it really isn’t.

The GP left a message for me on Friday. He had spoken to the neurologist and he had concluded that the symptoms were ‘unusual’. That at least seems unanimous. He would check on what was happening with any MRI appointment - and I hope chivvy it along. I guess the MRI now be extended to look along my spine (I have no pain anywhere still) - as well as the head for the Xmas time issues.

It is weird having an issue which involves no pain or other issues. Normally if you are off sick it’s awful because of all that extra time to yourself you can’t use because you can’t face reading or watching TV - because of a headache or other issue. And certainly you wouldn’t be able to play an instrument or write or whatever. But other than moving around or bathroom issues - I'll leave that there - I feel fine in myself in the main.

Today is Monday and there has been no obvious change one way or the other - maybe a little more discomfort to the right leg but I'm not sure. I still have numbness from the waist down and pins & needles in the feet - and the gods continue to throw mattresses in front of wherever I want to go. Tomorrow I am going in for blood tests (I think just B12 related). I had bloods taken between Xmas & New Year and everything came back okay - apart from elevated cholesterol - I don’t expect the bloods to be the answer. But then again I had thought that it was ‘obviously the drug I was on’ and it wasn’t.

So it’s bloods Tuesday then MRI... when?


The prognosis is what!?

I’m beginning to feel like I’m in an episode of House and I'm expecting to be tested and prodded by multiple strangers in whites until House arrives on the scene and has to guess Lupus (it’s never Lupus) before some interesting and obscure cause is identified. My GP has already asked me about any poisonous or hazardous materials I may come into contact with at work - I could only think of Pringles. Fingers crossed the symptoms like the Xmas ones just disappears or they can identify it and treat it. Well, either way I'd like to know the cause. The not knowing is not good at all.

It reminds me of back in the 1990s I went into a isolation ward in Fazakerley hospital. I was quite seriously ill after returning from Nigeria. The most obvious symptom being my tongue swelling to fill my entire mouth so I hadn't eaten for days and found even drinking a great difficulty. Anyway after a few days my body returned to normal and they let me go. I left with the doctors never having identified what I had. I wonder if the same thing will happen again (although this time we’re all ostensibly in isolation)?
]]>