A.J. Walker

Multiple Sclerosis etc

Not The Best Knees-Up

This 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!).

Arthritis Jab, Taps, and Communication

Early 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.

Annual(ish) MS MOT

Every 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!

Applying for a Disability Rail Card

I 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.

Railcard list
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


A Non-Tea Infusion & The Pressure

A 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.