Sunday, May 16, 2004

The moral of the medical road trip story is that if you have a disease with which 250 other people in the world have been diagnosed, and if there is one doctor who has seen 57 of those people, it is a good idea to go out of your way to get a second opinion from that doctor. Basically, he told me that my disease is so rare that it's impossible to know what my prognosis is, or what treatment would work best, or really anything. You just can't do controlled studies with a sample that small. It was actually a bit reassuring just to hear him say that, because I knew it was true, and it made me trust him. And at least he's basing his opinions on clinical observations of a fair number of people with the Very Rare Condition. More people than anyone else has seen, at any rate.

So here's what he said. In general, vertigo is a temporary symptom of the Very Rare Condition, and it usually goes away on its own in three to six months. He said that if the prednisone hasn't helped yet, he doesn't think it will, and I should go off it and hope that the vertigo fixes itself. He said that only three other people have presented with vertigo and no hearing loss. Two of them never lost any hearing. The third one did within a matter of months. So the odds are slightly in my favor, but the sample is really so small as to be meaningless. He said I need to monitor my hearing and go in at the first sign of any problem, because steroids can arrest hearing loss once it starts. But he said that there's no evidence that taking steroids now will do any good, and at any rate, I can't take this dose indefinitely. Also, about 12 percent of the 57 people have developed heart problems, which can be really serious. So I need to start paying more attention to my health in general: if I feel tired or sluggish or generally lousy, I need to see a doctor right away to make sure my heart is ok.

I'm not sure why this made me feel so much better. Nobody's offering me any guarantees: nobody is promising that the vertigo will go away, or that I won't lose my hearing, or even that I won't die of this. I suppose part of it is just relief that I'll probably get to stop taking steroids. Part of it, I think, is that I feel a little vindicated. The doctor last week was really obnoxious about my insistance on getting a second opinion: he simultaneously accused me of being neurotic and of not trusting him. (This is slightly ironic, since he claimed, inaccurately, that the Very Rare Condition is not significantly different from a more common, similar condition with which he has extensive experience. But there turns out to be a big difference, and that's the heart stuff, which is a rare complication of the Very Rare Condition but which is the most serious aspect of it. He didn't even realize that I needed a baseline EKG, because if I'd had the More Common Condition, my heart wouldn't have been a concern. So I was, in fact, right not to trust him. He didn't, in fact, know as much as he thought he did. Moral of this story: I'm probably right to be wary of doctors who feel threatened by second opinions.) And part of it is just that I've found the person who knows the most about this, even if it's not very much. I can deal with uncertainty, as long as I'm getting the best advice possible.

So that's the news from the medical front. Hopefully tomorrow I'll have something slightly less boring to post about.

Wow. Scary stuff, but I'm glad you saw someone who knows what he's talking about. You're right, it's got to be a bad sign (about the doctor) when a doctor doesn't want you to get a second opinion.
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