One month in, crunching the numbers for a new “normal”

Standard

Multiple Sclerosis has been described to me as a series of peaks (which are bad) called ‘relapses’; then troughs (which are good) called ‘recoveries’. The difficulty is no one, doctor nor scientist, knows the height of any peak, nor depth of any trough; their durations, nor the gap between them. The kicker is that the troughs often do not wholly return you back to you starting point – but to a new, worse-off position each time. So relapses are bad short-term – but also bad long-term. This is why the condition is called ‘degenerative’ – and why MS sufferers risk always looking anxiously over their shoulder, fearing the next ‘peak’. There is a variety of MS “types” – but most are of this relapsing, then recovering, type.

What sufferers are keen to avoid is ‘primary’ or ‘progressive’ MS – here there are little to no recoveries, and the relapses are more frequent and more severe.

Latest symptoms

My symptoms of early this year seem to have settled a bit now – but I really hope that this isn’t yet my new ‘normal’. I want a fuller ‘recovery’ – not least (because it would be my first) it would allay fears of a more ‘primary-type’ condition. Apparently ‘recoveries’ can take up to a year to occur, so all I can do now is wait.

I’ve been advised to slowly increase my doses of “Gabapentin” because I still have (pretty continuous) pins and needles in my fingers and toes. These make walking or standing for any period of time really uncomfortable. I have hypersensitivity and numbness (the two extremes) in both thighs, abdomen and, less so, on my shins. I have intermittent pins and needs in my left hand; and some more personal issues regards my ‘water-out functions’ that require careful attention (!) I realise that this last symptom should be a goldmine for humour, but I’m feeling a bit past that: last week, I needed the loo 8 times on one 4 hour bike ride; and 5 times during a single night’s sleep (and, yes, I was counting!) It’s an embarrassing disaster waiting to happen.

But it is my vision issues that are the most handicapping, and worrying – my vision gets distorted through a series of factors which I’m trying to better understand. Certain types of tiredness seems to be the main driver. And problematically for my hobby, being out on a bike for an extended period seems to be a reliable cause. Elevated body temperature is a documented cause of MS vision problems, “Uhthoff’s Syndrome”, and my MS nurse is adamant that this is the case with me – but I remain sceptical that this reconciles exactly to my experiences: I’m convinced that cycling on bumpy stretches of road (which entail a lot of head-joggling and therefore eye movement) are a key contributor. On two rides this week, descending fast on uneven roads was a definite, and almost, immediate cause. I’m going to have to experiment with descending hills even more slowly than I do already (my days of fast down-hilling are long behind me anyway!) Whatever the theories though I have been trying to stick to the advice I have been given: to keep my heart rate “out of the red”; and to rest periodically during exercise.

And then, lastly, there’s the symptom of worry. A new concern to deal with – that every twinge in muscle or twitch of nerves might be announcing the arrival of a new bout or symptom. One morning this week I woke up with pins and needles down my right arm. These went within minutes, but alarm bells were sounding.

Reading various MS discussion boards and posts I realise that MS can, and might still for me, get much, much worse than this. There is actually quite a lot of anger on these boards directed at sufferers of “MS-lite” who complain of their symptoms whilst running marathons (inspiring) or riding bikes. Personally I want my MS to be as “MS-lite” as possible. Fingers crossed – I just need to remember to not cross them obsessively to the detriment of my actual life.

I have asked (and will continue to do so) the same question of every health care professional I have met: will cycling exacerbate my condition in any way? The answer has always been “no”. I have just been told that some days I simply will not be able to cycle; some days I simply will not have recovered from a previous ride; and some days I will feel weak and be unable to “fully activate” some muscles.

 

Crunching the Numbers

My assigned MS nurse has been valuably reassuring and I have been hugely grateful for her support. But everyone I speak to is very reticent to give you any opinions on the likely progression of the condition. “No one knows”. But there is also a large element of not wanting to scare the newly diagnosed because, let’s face it, the worst possible case is very bad indeed. So I turned to the internet.

Predictably figures differ. But for a man of my age, newly diagnosed – there appears to be roughly a 15% chance of having a condition at the primary/progressive end of the spectrum. Let’s not beat around the bush here – this basically means that you could well end up being in a wheel chair in 3-5 years.

If you dodge this bullet, roughly 65% of sufferers “require walking aids” within 10-15 years. If you get through this zone of progression, patients’ odds begin to align more and more with non-sufferers – for example, in 20-25 years the probability of an MS sufferer dying of cancer is very similar (well, similar enough) to a non-sufferer. If you have MS, your life expectancy is shortened by roughly 7 years.

I also read that of MS sufferers who suffer visual distortions, roughly 3% experience total vision loss at some point during their lives.

I feel as though I need to know such figures – to unveil my hidden enemy – but this is just the tip of the iceberg. This all feels very ‘new’, and I need to find out more…. to draw MS out into the honest open where we can now do battle.

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