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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.
greetings, I was diagnosed with familia
episodic ataxia disorder in the 1990s. I have learned through the years that if I restrict my carbs, sugar and processed foods I can control my symptoms without medication. I was in Diamox for 20 years but it eventually stopped working for me. I do have issues with fatigue and disequilibrium which is challenging. This disorder has also affected my heart and lungs. Anyone out there have similar issues??? Sometimes I feel frustrated because my neurologist can’t do anything except prescribe valium to calm my brain. I was diagnosed at UCLA by Dr Balouh and Dr Jenn in the early 1990s
@satenig - I wanted to let you know I moved your post here so you could speak with others talking about hereditary ataxia:
- Hereditary Ataxia: What treatment helps?https://connect.mayoclinic.org/discussion/hereditary-ataxia/
Fellow members such as @stevegrinstead @pelagius @nurse49 and others can let you know if they also have hereditary ataxia and if they have disequilibrim and fatigue, plus an affected heart and lung.