Thumbs down
New lesion(s). In my brain. Less than three of them. They were there on my December MRI results, but I just found out about them today. I don't feel like doing all the exposition right now, but the bottom line is that the study protocol for the drug study I am in says that I have to be offered MS therapy now. So, I've been offered Avonex - self-injected once a week for...ever? sideeffectsincludeflulikesymptomsfor48hoursfollowinginjectionandprofoundsadness
I don't know whether the new lesion(s) actually correspond with the vertigo - it would depend on where they are and I didn't have a chance to talk to anyone about it. The vertigo could still be a separate thing. But I mean, if I am highly likely to develop MS, and vertigo occurs commonly in people with MS, and my MRI shows new MS-like disease activity in my brain, well, it's probably not that I have a secret inner ear infection I didn't know about until just now.
But it COULD be.
So the question is, how much additional investigation do I do before I decide to take Avonex for the foreseeable future? Maybe nothing else will ever happen and this is all just a crazy series of events that totally look like but miraculously aren't MS. But, maybe it isn't, and if it isn't, when I start therapy will determine my level of disability for the rest of my life.
I called the neurologist I saw before I entered the drug study, and he said that, based on the vertigo and the new lesions, he would recommend starting Avonex now. So on some level, I just want to say that that's the end of it, and that's what I'll do. But nobody has actually given me an MS diagnosis, because I don't quite meet the criteria in this legalistic way that strikes me as fairly ridiculous. But ridiculous or not, I feel like I can't start taking some pain-in-the-ass self-injection MS drug without actually "having" MS. But what if taking an MS drug is what I need to prevent me from ever actually having it?
But what if I weren't ever going to get it anyway? It's kind of a Schrodinger's Cat thing, or that's what I keep thinking of, even if it's not exactly the same.
Anyway, I am not going to be able to deal with this until after I get back from Australia in mid-March, so I have some time to think about it. Now might also be a good time to tell my mother about the whole thing, since it's been going on for, oh, 18 months. On the other hand, maybe I never need to tell her about it. You see how this works?
There are a lot of "buts" in this post, even for me.
BUT I will say that if I had to have a second MS "event" after having optic neuritis, I'm at least glad it was vertigo, which on some level brings me closer to being like Lucille 2.
I don't know whether the new lesion(s) actually correspond with the vertigo - it would depend on where they are and I didn't have a chance to talk to anyone about it. The vertigo could still be a separate thing. But I mean, if I am highly likely to develop MS, and vertigo occurs commonly in people with MS, and my MRI shows new MS-like disease activity in my brain, well, it's probably not that I have a secret inner ear infection I didn't know about until just now.
But it COULD be.
So the question is, how much additional investigation do I do before I decide to take Avonex for the foreseeable future? Maybe nothing else will ever happen and this is all just a crazy series of events that totally look like but miraculously aren't MS. But, maybe it isn't, and if it isn't, when I start therapy will determine my level of disability for the rest of my life.
I called the neurologist I saw before I entered the drug study, and he said that, based on the vertigo and the new lesions, he would recommend starting Avonex now. So on some level, I just want to say that that's the end of it, and that's what I'll do. But nobody has actually given me an MS diagnosis, because I don't quite meet the criteria in this legalistic way that strikes me as fairly ridiculous. But ridiculous or not, I feel like I can't start taking some pain-in-the-ass self-injection MS drug without actually "having" MS. But what if taking an MS drug is what I need to prevent me from ever actually having it?
But what if I weren't ever going to get it anyway? It's kind of a Schrodinger's Cat thing, or that's what I keep thinking of, even if it's not exactly the same.
Anyway, I am not going to be able to deal with this until after I get back from Australia in mid-March, so I have some time to think about it. Now might also be a good time to tell my mother about the whole thing, since it's been going on for, oh, 18 months. On the other hand, maybe I never need to tell her about it. You see how this works?
There are a lot of "buts" in this post, even for me.
BUT I will say that if I had to have a second MS "event" after having optic neuritis, I'm at least glad it was vertigo, which on some level brings me closer to being like Lucille 2.