A.J. Walker

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A Cold Spring

It'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).
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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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