What I should’ve been told about clinically isolated syndrome and MS

In 2007, at age 47, I had my first-ever consultation with a neurologist. It was during my longest-ever hospital stay, as of then — a whopping eight days. It amazed me that some of my fellow patients in the ward managed to gather themselves and struggle outside for a ciggy, despite being seriously ill. To be fair, though, they were at least getting some exercise.

In the National Health Service here in England, hospital wards are reminiscent of the army during basic training, minus the bunk beds. If smokers were allowed to puff away on top, though, there’d be no shortage of volunteers — even if they stood no chance of making it.

My medical tests seemed never-ending. Nobody hinted at what was the matter with me. All I knew was that I’d had some tingling in my left arm and my balance was way off, which was confirmed by me thumping down on a tennis court and wrecking my right shoulder.

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I wish I’d known the odds

The avuncular neurologist told me reassuringly that I had a single sclerosis, which may or may not develop into multiple sclerosis (MS). He advised me to keep any life and medical insurance policies. Fortunately, Saint Jane (my wife) was also present. So when I suggested canceling mine much later, she quickly talked me out of it. That turned out to be the worst idea I’d ever had. My best was marrying Saint Jane.

A single sclerosis is actually known as clinically isolated syndrome (CIS). It’s possible the neurologist mentioned this — though even then, I’d always latch onto obscure medical terminology. What the doctor didn’t mention was that I had a 60% chance of developing MS within a decade. All my neurologists tend to be positive. I have a feeling that imparting bad news all day would be too soul-destroying. In my experience, MS nurses are the pragmatic ones.

After the CIS diagnosis, I wasn’t offered any treatment or follow-ups. I was on my own.

I didn’t know this at the time, but because a brain lesion was present on my MRI, I actually had a 60% to 90% chance of developing MS. I was no gambler, as a university statistics course had at least made me aware of the futility of it all. I’m pretty sure you’ve got the same infinitesimal chance of winning the lottery whether you play once in your life or enter regularly. And to win it more than once means entering multiple lotteries. Sorry if I’ve taken the fun out of it for you.

After I was discharged home, instead of hitting the net to research, I plunged back into my hectic showbiz career. Thinking positively, I madly even went back to playing a bit of tennis. I was determined to be one of the lucky ones.

I wasn’t.

Eventually, I learned to research heavily and question everything. Somewhat ironically, being an awkward patient made me a good one.

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