This week marks an important anniversary for me. Exactly 22 years ago, a neurologist told me, in a rather cold tone, that the reason I had blurred vision and couldn’t feel my legs was because I had the incurable neurological condition multiple sclerosis (MS).
I was 25 and I thought my life was over. I remember sitting in his office, close to tears, as I imagined a future chained to a wheelchair, blind, incontinent and eventually unable to speak or swallow. My plans and dreams vanished in an instant.
What I couldn’t have predicted was that, two decades on, I would still be mobile, active, able to work and have no apparent disability. As for those plans and dreams, I’ve realised many of them: motherhood, seven published novels, a successful journalism career.
For some, as yet unknown, reason my MS didn’t progress. Neurologists now tell me I have benign MS, a label that can only be applied retrospectively, at least 15 years after diagnosis. I’m in a tiny minority. About three per cent of all people with MS have this form, according to a new study.
It means that I may never end up like so many patients, gripped by muscle spasms and crushing fatigue, unable to walk, befuddled by memory problems and heavily medicated to control widespread pain.
When I had an MRI scan two years ago, it showed that there were many visible scars on my brain and spinal cord, revealing the damage inflicted by the condition.
In MS sufferers, the immune system turns inward and attacks healthy nerve tissue. Yet my condition was seen not to be active – no new damage was occurring. In that regard, I am very lucky.
However, having a benign form of MS doesn’t mean I am symptom-free. I still experience tingling, numbness, electric-shock-like pains, and pins and needles, plus occasional fatigue and blurred vision.