3 ms·

My mother in law woke up one day, couldn't stand. Everything was spinning. She said it was like the most intense carnival ride of her life, endless spinning. Cl

My mother in law woke up one day, couldn't stand. Everything was spinning. She said it was like the most intense carnival ride of her life, endless spinning. Closing her eyes didn't help. She began vomiting, and didn't stop. 12 hours later she went to the ER. They tested for everything they could, specifically to rule out stroke. The only thing that came up was a small bit of fluid buildup near her ears that appeared on an MRI (maybe it was in her ears, I can't remember, this was several years ago). Doctors gave her steroids and antibiotics. After a week of feeling like being on a carnival ride (and endless puking), she could close her eyes without spins, and she went home. It took another week to be able to open her eyes without the spins and focus, but it was still very wobbly, like a seesaw back and forth. She went from being a marathon runner to essentially hobbled. Every day was a tiny bit better. After a month she could watch TV. After 2 months she could walk without assistance. She wasn't fully better for 6 months. You never know what life will bring. One day you wake up and you are on a carnival ride that never ends.

tomcam 3y ago
Beautifully written. In equal parts poetic and depressing.
el_benhameen 3y ago
That’s absolutely terrifying. Did she ever get a definitive diagnosis?
- monero-xmr 3y ago
  "Viral infection" was the best they could say.
Yodel0914 3y ago
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.
MichaelRo 3y ago
Might have been the mumps, particularly if encephalitis complication occured, "Symptoms include abdominal pain, nausea, and vomiting. The mumps virus also leads to permanent hearing loss in about 5 out of every 10,000 cases." She checks for nausea and also ear-related stuff. Also, one symptom for mumps in me as a kid was nausea so bad I couldn't stand up, only fetal position with eyes closed helped somewhat. I suppose she didn't get tested for the mumps virus, right? Not that there's much to do, the support is largely palliative until the body fights the virus off.

tomcam 3y ago

Beautifully written. In equal parts poetic and depressing.

el_benhameen 3y ago

That’s absolutely terrifying. Did she ever get a definitive diagnosis?

monero-xmr 3y ago
"Viral infection" was the best they could say.

Yodel0914 3y ago

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.

MichaelRo 3y ago

Might have been the mumps, particularly if encephalitis complication occured, "Symptoms include abdominal pain, nausea, and vomiting. The mumps virus also leads to permanent hearing loss in about 5 out of every 10,000 cases." She checks for nausea and also ear-related stuff. Also, one symptom for mumps in me as a kid was nausea so bad I couldn't stand up, only fetal position with eyes closed helped somewhat. I suppose she didn't get tested for the mumps virus, right? Not that there's much to do, the support is largely palliative until the body fights the virus off.