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 whole spectrum 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.
The symptoms I had 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 pins and needles (which are continuous) in the tips of all my 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 – wrist and fingers; 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 well 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 downhilling 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.
An MS diet
Upon diagnosis, revisiting or reappraising one’s diet is a recommended first step. There are a number of suggested “MS diets” – which range from the “do not do anything different, just eat healthily”; to the “cut out everything apart from fruit, veg and seeds” – all aimed at decelerating the progression of the condition. These diets all have their devotees and their detractors – but the science behind all of them is unproven. However, adopting a diet towards the former end of these seemed to me to be a low-cost, low-risk approach, with potentially large benefits. As a result I have: gone vegetarian (apart from large amounts of white fish); cut-out foods containing significant amounts of saturated fats (out with chocolate, crisps, ice cream, chips and cakes); ceased to eat fried food; and stopped eating dairy products (the hardest loss to bear has been cheese – which has ruled out pizzas etc). The MS nurse also suggested cutting out caffeine as a way of combating bladder issues – but, at that, I drew the line…
The main source of my saturated fat intake is now in the form of cod liver supplements and flaxseed oils.
The immediate short-term implications have been a significant increase in our food bills (by about 15%-20%); and me losing 9kg in body weight. I am 6″1 and 78kg – so I did not exactly have much to lose. I’m just simply finding it hard to consume enough food to keep my weight on (although this is probably great for hill climbing on my bike!!)
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.
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.