I saw my neurologist a few weeks ago for what was effectively an emergency meeting. I’d had the customary two rounds of Lemtrada (alemtuzumab) and still had a relapse. We discussed weighty subjects and there seemed, surprisingly, to still be some hope. It depends on the outcome of an MRI; I will have that clanking-heavy-metal procedure on the day of this article’s publication. Whichever way it goes, that’s a column for the future.
What interested me was the doctor’s flickering, dismissive reaction to (admittedly) a completely by-accident practice of mine. I take ibuprofen regularly, not for pain but because it makes my right arm work better. In truth, it also often ached at night — not anymore!
My right side has slowly been disintegrating over the years, to such an extent that my right leg has to be heaved around by others or myself. Not easy when the excess baggage of pitting edema has turned it into the equivalent of a baby elephant’s limb. The disintegration had been an imperceptible creep, but my right hand’s loss of ability was instantaneous. The only problem I’d had was occasionally throwing my racket instead of gracefully (I wish!) hitting the ball while playing wheelchair tennis. After my very first infusion of Lemtrada, my right hand no longer worked properly. I’m sure this would have happened eventually — the drug just exacerbated it.
My handwriting, which has always been terrible, descended into such a state that even I couldn’t read it. In this modern technological world, this shouldn’t matter, but unfortunately, my professional life requires that I write notes in darkened conditions. Years of theater criticism had made me something of an expert at this, but MS has reduced me to preschool scribbling.
A while back, I tried a marijuana experiment. Despite being heavily “baked,” I could walk better, though I now can’t remember why I was walking somewhere! The thing that really stuck with me was that my right hand miraculously worked well again and suddenly my right arm got pretty much its full range of movement back. Any pain in the arm also completely disappeared for weeks.
Besides being illegal in the U.K., getting stoned is in itself too much of a fuss. I’d found a neat way of making naughty milkshakes, but it was too much like hard work — I also lost too much time to the drug. Spending an entire evening in induced nirvana is intolerably boring. I can’t stand “mindfulness” either, even though there is now plenty of supporting evidence that it is good for MS patients.
At some point, I discovered that ibuprofen did the trick. I could write better, my range of movement improved, and any nagging muscular pain in my right arm disappeared. And I didn’t lose an evening to it! Now, I fully accept that this could just be psychosomatic, but I don’t care, as it works for me. Ibuprofen has a role in pain relief, but I can’t find any citable research about it surmounting MS physical problems.
My other recent trick is dealing with trigeminal neuralgia. If you don’t have that, be very thankful. It’s a severe pain that attacks the mouth, and it’s so tricky to treat that even heroin wouldn’t alleviate it. What does, is a medication called carbamazepine. However, that treatment’s downside is that it severely reduces any mobility that I have left.
My trick is that when I get into bed, I take two: Mobility issues are no longer a problem, and when I get up, I have many more pain-free hours during the day.
I’m not recommending any of this; it’s just the ways I’ve found to make life a little easier. With athletes these days, it’s all about improving performance by increments. These are mine.
On your marks …
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