A.J. Walker

writerer

Limboland

Limboland-1

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.

Limboland-2

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

MS Soc-logo

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
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First Nurse

It 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.
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Appointment Assumption Nightmare

Had 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.

Clues
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: ‘A
ssumption is the Mother of Fuck Up.’
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Walk into Town: Onwards Downhill

Since 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.

Anfield Cem2

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.

We Are Liverpool

Anfield Stad1

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).

Liverpool Skyline

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.

Adelphi 1

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.



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Walking And All That

A 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.
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Paranoid Andrew

Didn’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.
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Boss People, Good Food - Don't Mention the Coffee

This 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 ;-).

Fazak Hosp2
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.

walton centre1
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.
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Tests and Tests and M&S

After 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.

Hospital Bed1
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). The 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: 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.

lumbar punc
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.
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