Multiple Sclerosis activity 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, can predict 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 your 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 few or no recoveries, and the relapses are more frequent and more severe.
Two months post diagnosis and my symptoms of earlier that year seem to have settled down 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, yet again, all I can do now is wait.
I’ve spoken (again) to the MS nurse who has advised me to slowly increase my doses of “Gabapentine” 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 still have that 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.
Last week I was out on my bike and I started timing how often I needed to stop and wee. About every 40 minutes. It was so reliable that one-time I thought I’d trick the symptom and stop in anticipation – but the tactic failed. I wondered what weird twist on the “normal” my body would become – what it was morphing into that I didn’t recognise.
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 symptom. One morning this week I woke up with pins and needles down my right arm for the first time. 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.
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 reluctant to give you any opinions on the likely progression of the condition.
“No one knows”.
“I know it’s hard, but be patient.”
This feels like a game we’re having to play because I know, as well as them, that there is a large element of not wanting to scare the newly diagnosed – let’s face it, the worst possible case is very bad indeed. So I turned to the internet for some better data.
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. No time for sugar-coating 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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I research the above and can wait for my NHS consultant’s appointment no longer.
I make a few phone calls and book a private medical appointment with a neurological consultant from Southmeads Hospital, Bristol.
£300 to seek answers to the rest of my life.
Cycling with MS 