Over 100,000 people in the UK live with Multiple Sclerosis but until recently, it was rarely talked about. It’s taken me a year to open up about my own diagnosis. Inspired by the BBC’s Caroline Wyatt and the actress Selma Blair – who have recently talked about living with MS – I’ve found that writing about it is one of the best therapies.
It all began one Sunday morning, just over a year ago. Anyone who knows me well will be aware that it takes a hell of a lot to get me up early on a Sunday. But there I was, at the crack of dawn, lying in bed thinking ‘sh*t, what’s happened to my legs?’. They were tingling from the tips of my toes right up to my thighs. Severe pins and needles is probably the closest way to describe it. My feet were the epicentre of whatever it was; almost entirely numb.
By the afternoon of the following day it was slightly worse. Should I bother my GP? Nobody ever died of pins and needles. And who, but utter time wasters, goes to the GP complaining of tingly legs?
So I decided it was time to break the ‘never self-diagnose on the internet’ rule. Within a few seconds I read: Multiple Sclerosis.
It’s a cliché to say that suddenly everything changed, but clichés are often true. The thing I should explain is that I wasn’t jumping to some preposterous, internet-induced conclusion born of hypochondria. I knew for certain it was MS.
Eighteen months before, I’d had another strange symptom: I lost a bit of vision in my right eye, which the eighth doctor I saw eventually diagnosed as Optic Neuritis, an inflammation of the optic nerve. Thankfully it cleared itself up in a few weeks, but I also learnt that it’s a common symptom of MS. So when I read the stark abbreviation ‘MS’ again that Autumn day, my heart sank.
The following few days were, to be frank, awful. A doctor confirmed the diagnosis to me brusquely in an emergency hospital appointment. I was on my own. I’d managed to hold it together pretty well, but eventually burst into tears. I wished desperately I’d taken someone with me, but at that point just couldn’t bring myself to tell those closest to me. How does an only child break it to her parents that she has a life-altering condition?
I began a course of intravenous steroids, which would quicken my legs recovering, but aren’t a cure. I emailed a few close friends, and there was an outpouring of sympathy and support. One accompanied me to the first session, where I tried hard to stay strong and stable, but did not. The sheer terror of not knowing what was about to happen, a dozen other in-patients with drips attached to them, all glaring at me, combined with my friend’s hugs, brought on yet another embarrassing sob.
But as the days went on I calmed down, my neurologist assured me I’d be fine, and I managed to tell my parents.
MS happens when your immune system attacks your nerve fibres, meaning your brain can’t send signals through your body correctly, affecting how you move, feel and think. I’d been diagnosed with a type called Relapsing Remitting MS (RRMS), which is what around 80% of MS patients have (the other 20% have more aggressive types).
RRMS means you alternate between ‘relapses’ and being in remission – but that remission could be for weeks or years, until it’s interrupted by a ‘relapse’ – the sudden appearance of a new symptom.
It sounds vague, and that’s why MS is hard to describe – because no two people will have the same range of symptoms. My numb legs and the Optic Neuritis were relapses. My bouts of incredible tiredness are a common year-round symptom. But who knows what – if any – my next relapse could be? That’s the worrying bit.
As a woman, I am also far more likely to be an MS patient than a man: it’s the thought the ratio is around 3:1, but it’s not yet clear why.
However, there is actually a lot to be optimistic about. Firstly, medical advances, particularly in drug development, have been dramatic. If I’d been diagnosed 20 years ago it’s unlikely I’d have been offered any medication. Last year I was offered a huge range, eventually opting for an immuno-modifying drug called Tecfidera, which has a good success rate in halting progression.
But there’s no cure for MS: it can only be slowed. Enormous advances have been made recently in stem cell treatment, and recently scientists announced that a common diabetes drug can repair nerve damage caused by the disease. That is very exciting news.
Finally, after the initial period of denial, I know a lot more about MS. I know some people have it mildly, and live a good life. I know I need to eat healthily, exercise, take Vitamin D and avoid stress (the holy grail). I’ve met two women who have RRMS like me, and they’ve explained how “ok” it can be
I am also endlessly thankful for medical advances and organisations like the MS Trust, and of course to my friends, my parents and my boyfriend for their support, their chicken soup, and for not dumping me.
So yes, it’s been a very odd year, with some dreadful lows and some highs, but I’ve emerged the other side, relaxed enough to be able to share this. At the time of my diagnosis I couldn’t bear to say the words Multiple Sclerosis out loud – they made me shudder. I can now, with a better understanding of what they mean. Writing it down is the best remedy I’ve found so far.