4 ms·

My wife had something similar - though slightly different symptoms (migraines, memory loss, paralysis, seizures). It was a bumpy 2 years, to say the least, unti

My wife had something similar - though slightly different symptoms (migraines, memory loss, paralysis, seizures). It was a bumpy 2 years, to say the least, until she was 80% functional. Now, about 7 years from the first ocurrance, she's pretty much 100%. The best we've figured is an infection (she was sick as a dog beforehand) interacted weirdly with her (then undiagnosed) familial hypercholesterolemia and inherited predisposition for migraines. My take away was not only how vulnerable we are, but also how useless modern medicine is in some situations. We went through a bunch of specialists - only one helped at all, but the side-effects of the drug he prescribed were almost worse than the symptoms. We ended up making the most progress by experimenting with diet, exercise and supplementation (which makes more sense now that we know about the FH).

kelnos 3y ago
> ... but also how useless modern medicine is in some situations. Yeah. I've read enough online about people with uncommon illnesses to realize that our medical profession is exceedingly heavily optimized for common cases. That might sound weird, given that there are so many common cases (tens of thousands? more?), but that's why medical diagnosis is so difficult, and the doctors best at it so prized. But doctors see enough patients who try to self-diagnose, and fail miserably at it, that they're inherently skeptical of anyone who suggests they're suffering from an oddball disease. That's a pretty dangerous bias to have. And on top of that, it seems like there are quite a few doctors who will go even farther into denial, and default to assuming a patient's pain isn't real, when their usual diagnostic tools fail to find a problem. I'm not trying to be super negative on doctors; there are so many out there who do their best and genuinely want to help. But I'm not sure how we solve this problem.
- Yodel0914 3y ago
  > And on top of that, it seems like there are quite a few doctors who will go even farther into denial, and default to assuming a patient's pain isn't real, when their usual diagnostic tools fail to find a problem. 100%. I had a neurologist tell me (while my wife was in a hospital bed, unable to move) that the tests he had done proved that there was nothing wrong with her. I said "you mean the tests don't show any possible issues?" and he said "no, they prove that nothing's wrong. I don't know why she's choosing to act like this". After that, we never went back to hospital no matter how bad her symptoms got - we just dealt with it at home, which was terrifying. At one point she almost drowned in the bath. I have some sympathy for him (in hindsight - at the time I was full of white-hot rage). He can't know the sort of person my wife is, and how ludicrous the idea of her faking an illness is.

kelnos 3y ago

> ... but also how useless modern medicine is in some situations. Yeah. I've read enough online about people with uncommon illnesses to realize that our medical profession is exceedingly heavily optimized for common cases. That might sound weird, given that there are so many common cases (tens of thousands? more?), but that's why medical diagnosis is so difficult, and the doctors best at it so prized. But doctors see enough patients who try to self-diagnose, and fail miserably at it, that they're inherently skeptical of anyone who suggests they're suffering from an oddball disease. That's a pretty dangerous bias to have. And on top of that, it seems like there are quite a few doctors who will go even farther into denial, and default to assuming a patient's pain isn't real, when their usual diagnostic tools fail to find a problem. I'm not trying to be super negative on doctors; there are so many out there who do their best and genuinely want to help. But I'm not sure how we solve this problem.

Yodel0914 3y ago
> And on top of that, it seems like there are quite a few doctors who will go even farther into denial, and default to assuming a patient's pain isn't real, when their usual diagnostic tools fail to find a problem. 100%. I had a neurologist tell me (while my wife was in a hospital bed, unable to move) that the tests he had done proved that there was nothing wrong with her. I said "you mean the tests don't show any possible issues?" and he said "no, they prove that nothing's wrong. I don't know why she's choosing to act like this". After that, we never went back to hospital no matter how bad her symptoms got - we just dealt with it at home, which was terrifying. At one point she almost drowned in the bath. I have some sympathy for him (in hindsight - at the time I was full of white-hot rage). He can't know the sort of person my wife is, and how ludicrous the idea of her faking an illness is.