Got diagnosis (90% sure neurologist). Multiple system atrophy. Anybody want to be my MSA buddy, someone who has this already? Reading about it is one thing, talking to someone is better I think
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My neurologist has been throwing every test at me and so far all they've come up with is vestibular migraine, which I've had complicated migraine my whole life and never had the symptoms I do now (that started out of nowhere about a year ago). Which include ataxia, nystagmus, tremors, and a whole host of other neurological symptoms...
So not diagnosed with MSA, but empathic to your situation. I would have never guessed how much more debilitating neurological conditions could get after having spent 40 years with migraines that would sometimes keep me in bed and in agony for days at a time every month of every year.
The muscle weakness, loss of coordination, tremors, and general bodily dysfunction disables me more than those horrible headaches did and I previously couldn't have imagined that would be true. And all this just as I finally got my head pain stuff under control! It's enough to make me wonder if the solution to that may have caused the new problems, but that's another thing.
Anyway, I can't speak to your specific condition, but I know neurological dysfunction all too well and if you ever need to talk about it, my ears (and eyes) still work (sort of), for now... (gallows humor, can't help it).
Probably a long shot, but have you by any chance had exposure to dioxin (agent orange) when you were young? Like growing up on military bases or someplace like Laos or Vietnam?
I know a few people who have those symptoms, and they had significant dioxin exposure as teenagers, though the symptoms didn't start coming on until they were in their mid-to-late 20s. Being exposed as an adult would not result in disability, however. It has to be during development.