The day my tingly legs turned out to be multiple sclerosis
Despite her traumatic MS diagnosis, Sarah Deech has discovered there is a lot to be optimistic about
More than 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 but, inspired by the BBC’S Caroline Wyatt and actress Selma Blair, who have been candid 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 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: “S---, 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 almost entirely numb.
By the next day it was worse. Should I bother my GP? Nobody ever died of pins and needles. And who but an utter time-waster goes to the GP complaining of tingly legs? So I decided it was time to break my “never selfdiagnose on the internet” rule. Within seconds, I read “multiple sclerosis”.
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. It soon cleared up, 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.
I began a course of intravenous steroids, which would quicken my legs’ recovery, but isn’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 inpatients 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
Who knows what – if any – my next relapse could be? That’s the worrying bit
diagnosed with a type called Relapsing Remitting MS (RRMS), which is what around 80 per cent of MS patients have (the rest 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 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 thought the ratio is around 3:1, but it’s not yet clear why.
However, there is actually a lot to be optimistic about. Drug development has 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 in stem cell treatment, and scientists have found that a common diabetes drug can repair nerve damage.
After an initial period of denial, I know a lot more about MS. 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. Writing it down is the best remedy I’ve found so far.