I was diagnosed with MS in 2000. I’d been ill with odd, inexplicable symptoms since 1992 and just got on with life.
The attack in 1992 was terrifying. I lay on the hospital bed, having been sent there by my GP with very high blood pressure and I was willing myself to stay calm and not die.
My blood pressure soared to 260/160 and my poor husband was holding my hand and trying to distract me, so that I didn’t see the defibrillator, that the worried doctors had wheeled over to my bed.
I think this was quite possibly an attack of autonomic dysreflexia. My neck and face were bright red – and yet my chest was a normal colour.
The doctors gave me nifedipine and other drugs to reduce the hypertension and after a while, they worked.
The worst part was that this life-threatening condition had become permanent. I take four drugs to control my blood pressure and no one knows how or why it happened.
I had really obvious MS symptoms – numbness, muscle spasms, cognitive problems, balance problems and these persisted for some eight weeks after this sudden illness.
Then I recovered, the hypertension was controlled by a beta blocker and we got on with life.
One day, in September 2000, I got out of my car and suddenly couldn’t focus. I had double vision and after a rather amusing dash around various clinics in Jakarta, I was sent to Singapore, to Mount Elizabeth Hospital.
The diagnosis came next day, after an MRI and it was a shock. I wasn’t devastated, but I was curious – what was going to happen to me?
I had steroid treatment and went back to Jakarta. Then I was ill again and so I started beta-interferon.
The thing about beta-interferon 1-b (Rebif) is that it takes time to work. The injecting is just a natural fear, generally dispelled after the first injection. I didn’t get the flu-like side effects and thought that this may be it.
The next relapse was two months later and it was the weirdest one ever.
We’d gone out to a cafe for lunch and I went to the toilet and as I was washing my hands, I had a sudden thought that I could take my clothes off.
I didn’t. But the urge was there. I went back to Singapore and had another MRI and there was another lesion glowing and flaring in my brain.
This time, I was in trouble. The muscles in my forehead became paralysed and I couldn’t close my eyes. I couldn’t move my head and felt that I was in some sort of psychedelic horror movie.
After a good bit of doping, I managed to cope with the symptoms but by then, I was very ill. I was numb below the waist – had to remind myself to empty my bladder, which worked, even though I had no sensation.
However, by June, some four months later, I was fine.
Moving on, I had a couple more relapses, both of which took months to recover from. I thought I was fine, except that last year’s relapse, seemingly mild, was definitely a weird one.
I’d been writing erotic stories for my husband. One day, my hand refused to work and I realised that I was relapsing.
I received steroid treatment that day, but found that I didn’t want to talk. I read my Kindle for hours and slept a lot, but the relapse didn’t seem to do anything dramatic.
Then, under stress, I began to have dangerous impulses. I wanted to cut my wrists, I thought about throwing myself out of the car and suddenly realised that this was something to do with that old relapse from 2001.
That part of my brain that sent me messages to take my clothes off was misfiring again. I still have that urge – never give in to it, but now it’s linked with self-harming, or suicide – haven’t given into that either.
I take a small dose of Citalopram (10mg) and this stops the self-harming/dangerous thoughts.
MS. It’s an odd and potentially lethal disease. It’s not just associated with disability (I’m not disabled) but it damages the brain. Beware.
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