Isaacs syndrome. What happens is the immune system mistakenly attacks the machinery that re-polarizes the peripheral nerves after firing, so they fire constantly, which causes all sorts of problems. It’s an ALS mimic, so I was initially diagnosed with that. But after a long time of not dying, plus EMG inconsistencies, it became clear that was wrong.
I really wish you luck. It’s a hard and lonely road.
If you don’t mind me asking, what disease? I’ve found myself in a very similar position.
Isaacs syndrome. What happens is the immune system mistakenly attacks the machinery that re-polarizes the peripheral nerves after firing, so they fire constantly, which causes all sorts of problems. It’s an ALS mimic, so I was initially diagnosed with that. But after a long time of not dying, plus EMG inconsistencies, it became clear that was wrong.
I really wish you luck. It’s a hard and lonely road.