I was at the neurologist on Friday for my annual check-up. We’re blessed that Nottingham is a real centre of expertise for MS, but for me, these sessions are usually fairly short. Why wouldn’t they be? In a waiting room filled with people in wheelchairs and walking with sticks, why would someone who can run a marathon and run 45km in a 24 hour relay race need much attention? I do have MS-related problems, but comparatively speaking, they’re small beer. That doesn’t mean that the doctor’s don’t care about my problems, because they clearly do, it’s just that I’m doing really, really well.
In fact, it turns out that I’m doing much better than anyone might reasonably expect. My disease modifying drug (DMD) of choice is Avonex, and I’ve been injecting now since 2009. Avonex isn’t a cure for MS, but it is thought to slow down the progress of the disease, increasing the gap between relapses. In seven years, I’ve not had a single definable relapse. This is obviously excellent news, but it’s apparently also suspicious: without Avonex, it is reasonable to assume that I will have reported seven distinct relapses, with the associated increase in disability. With Avonex, my consultant informed me, I would still be reasonably expected to have two or three relapses. In fact, I’ve not had a single one. I can’t actually even recall the first relapse that brought about all my symptoms in 2005, and although my symptoms tend to ebb and flow, worse on some days than on others, but basically working around a consistent theme. I have numbness and pins & needles; I experience fatigue and weakness across my shoulders; I have cramping and twitching muscles; I have a loss of muscle strength and flexibility in my left side… but I haven’t really had anything completely new in 11 years (although it was a little alarming when the consultant asked me to follow a light with my eyes and then said, “a bit of double-vision?”….um no. Is there something you want to tell me?).
Apparently this is interesting: I must now have a full set of MRI scans to determine what’s going on inside my central nervous system, and if it all looks good, then I will probably stop injecting Avonex because it isn’t necessary. I haven’t actually been scanned at all since my head and neck were done in 2005 and identified the lesion that apparently caused all my symptoms. Funnily enough, my MS Nurse was telling me off about this only a few months ago: just because I was doing well didn’t mean that they shouldn’t look to see what’s going on inside my head and that I should insist on some new scans. She should be happy with this new development, anyway.
I don’t really know how I feel about this: I’m cautiously optimistic and will be delighted not to have to do this every week….but on the other hand, I haven’t relapsed since I’ve been injecting, and there isn’t really a way of knowing if this is down to the Avonex or not. Perhaps it is? One of my reasons for deciding to inject a DMD in the first place was that the only sure thing was that doing nothing would definitely do nothing and that doing something might help. Is doing nothing now the better option? Or maybe I actually have a slow-moving form of progressive MS, in which case disease modifying therapies wouldn’t be any use anyway. Who knows?
It’s certainly a ride. Although I generally seem to tolerate the side-effects of injecting Avonex pretty well, it seems I haven’t escaped entirely, and from that point of view alone, I will be glad to stop. Who knows what the future holds? No one.
Not even Gandalf…..for even the very wise cannot see all ends.
I want choices and I want them now
13 hours ago