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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