Hereditary Ataxia: What treatment helps?

Posted by nurse49 @nurse49, Nov 8 9:17am

I've been diagnosed with ataxia {hereditary}, gene unknown as yet. I am 75 and have been dealing with this "drunk" feeling since 2019. saw a copious amount of different physicians, some telling me it's all in my head... yes literally, and to get some Cymbalta for my anxiety. Finally got a proper diagnosis in February. My balance, vision, and nystagmus are unrelenting.I took 4-AP compounded and had a psychotic reaction to it....I am now on Dalphampridine ER... different in that it is regulated by the FDA. Any thoughts?

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stevegrinstead | @stevegrinstead | 6 days ago

I hate to be the one that delivers bad news, but they are correct, it’s all in your head , the Cerebellum part of your brain in fact. When someone is drunk, it’s the Cerebellum that is responsible for the symptoms. You literally have cerebellum damage. It’s called SS. I have it. Go to MayoClinc/stevegrinstead. They fixed a leak in my dura. Praying this helps.

nurse49 | @nurse49 | 6 days ago

In reply to @stevegrinstead "I hate to be the one that delivers bad news, but they are correct, it’s all..." + (show)

Yes, being a nurse for 45 years, I knew that before I was diagnosed in Feb. but no doc would listen to me. It took eight, before someone actually took me seriously!