My background to Multiple Sclerosis

So I’m now officially an MS sufferer.

I didn’t even know what MS was.

My first two questions were, “Is that bad news?” [I’m afraid so] and “Can I still race my bike this weekend?” [yes]

I asked, “Am I going to die early?” [hopefully not] and “Am I going to be disabled?” [again, hopefully not], “Can I still cycle? [yes, to an extent]… and can I still go to work?” [hopefully so].

The causes, symptoms and prognoses for MS sufferers (I am now discovering) are difficult to sum up succinctly. You’ve basically got an issue – unique to you – which you’re going to have to live with for the rest of your (hopefully long) life and manage as best you can.

It’s not curable.

It could be very bad. Could be not-so-bad…

I understand that its development can be managed with diet and drugs. As to the exact path it takes? You are, to some extent, in the lap of the Gods (but, then again, aren’t we all?) It would be extremely dangerous to ignore it, but it is something you can (hopefully) live around (or force it to live around you) – albeit with fingers crossed.

In fact I spent the first 48 hours post-diagnosis being so repeated told that it “might well not be that bad”, no one actually told me what was bad at all. I found myself in the crazy situation of googling “what’s so bad about MS?” The answer is that it’s a deteriorating neurological condition that only gets worse, and rarely gets better. Signals to and from your brain are at risk of getting increasingly fuzzy, to the extent that you may have issues controlling the feeling and control in areas of your body. At one end of the scale these maybe pins and needles in your hands and toes or muscle spasms; but run through the whole spectrum, through bladder and sexual dysfunction; to blurred vision, muscular weakness and severe fatigue; vertigo and imbalance; blindness and the inability to walk. Accelerated ‘brain shrinkage’ conjures up a horrible picture, and I’ve been introduced to terms like ‘brain fog’ and ‘cognitive confusion’. Typically MS sufferers have immune systems which struggle to ‘switch off’ after periods of activations (e.g. when you’re ill or infected’) – so apparent symptoms of illness linger, sometimes for many weeks at a time.

65% of MS patients have required walking aids within 15 years of diagnosis.

So, no – given that a week ago I thought I might have a trapped nerve in my back –  this is not great news.

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It’s easy to focus on the moment of diagnosis – the big “reveal” – and see this as the point that everything changed. But I guess everything had already changed for me, many months, probably years ago, when I first started suffering from this condition. So I saw my “big reveal” as more of a recognition of the issues that I have been having – in some strange way it felt like vindication or relief. As though I had long known this to be the case, and was at last being united with my destiny.

Now I have read more about MS (more than completely “zero” as had been the case) so many pieces of my own personal jigsaw have fitted together and make sense. Suddenly those tens of trips to the doctor with unexplained ailments have been justified – the bouts of intense exhaustion; listlessness; inability to overcome minor viruses; repeated days off work; blurred vision. It had become a running joke with my wife about what weird health oddity my body would spring next – over the last 4 years I’ve had all sorts of blood tests. I’ve had eye tests which reported me to have 20:20 vision despite the fact I was seeing in almost perfect double vision. I knew that something was wrong but I just didn’t know what. I had periods of terrible muscle aches that felt like a hangover from the Glandular Fever I had suffered in my teens; and winter-based depressions that I could only assume to be some sort of SAD (Seasonal Adjustment Disorder). There was that weird (and embarrassing) doctor’s visit when I complained that I had developed a strange symptom of urgently needing the loo with only seconds notice… I had always been a sociable drinker of alcohol but the hangovers started getting worse and worse – I had to stop drinking entirely because even a single unit of alcohol was rendering me bed-ridden the next day.

I had kept a “sickness” diary in an effort to find some sort of link between these bouts – but couldn’t find the key. Over the last 4 years my diary shows that I have suffered 5 bouts of extended illness/exhaustion lasting several weeks each time (the worst two bouts lasted almost 2 months each). These were periods when I could work, but only just. I just needed to sleep, sleep and sleep but couldn’t fight off the lassitude.

I had felt like a slightly unhinged hypochondriac. Now I’m a diagnosed MS sufferer with proof that I had a reason to have been making all this fuss. I just wish I could go back in time 4 years and explain all this to the doctor that was sighing as I kept telling him that ‘stress’ or ‘anxiety’ were not the cause.

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