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Hereditary Ataxia: What treatment helps?
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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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.
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2 ReactionsYes, 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!
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Did you check about SS. Dr. Kumar and Dr. Marsh.
Re hereditary ataxia, I was diagnosed in 2023 via a genetic test with a specific hereditary ataxia known as SCA-2, Spino Cerebellar Ataxia Type 2. There are around fifty types of genetic ataxia. They all have somewhat different symptoms, severity and length. I can relate to the feeling of being drunk; with poor balance, it feels like a bowling ball is rolling around inside the back of my head. The genetic test can help understand how fast the symptoms may develop. But everything is variable. That, for me, is the real frustration. No one can predict how fast or to what extent the symptoms will develop, especially with “low penetrance,” late onset disease.