Join the Ataxia discussion forum for patients, friends and families affected with ataxia.
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I am having a hard time navigating this site, but I finally found a way I hope. I am having a hard time with spasms in the neck, my neck is twisting and contorting my face and it hurts. I have a hard time when this happens during sleep. I contacted my PCP about botox shots to stop the spasms and the doctor refused said him and the neurologist cant see a need for botox for spasms. The HMO I have you cant sue for treatment you have to arbitrate so I am out of luck. They are good if you come in by ambulance and have good treatment. If you do not need the emergency room you are out of luck. I am just disgusted to tell you the truth. Jerry
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I have these spasms too. My neurologist diagnosed it as dystonia. It often occurs at the same time as Ataxia. My extreme eye twitching got so bad my eyes would close shut where I could not open them for 10-20 seconds. This got so scary when I was driving. I now get 10 botox shots around my eyes every 5-6 months. But I do not get botox shots in my neck, legs, ribs and arms. These spasms are so painful. The only relief I get is using CBD oil. Now I have my medical marijuana card I take CBD with a little THC. The painful spasms are gone but my balance is also super affected. So right now I am finding a does that works. I can handle a little pain and a little imbalance. Good luck that pain is so bad.
Hi, my name is Sherry and I am primary caregiver for my 43 year old daughter and her 14 and 6 1/2 year old sons along with my husband. My daughter was recently diagnosed with spinocerebellar ataxia after 6 years of symptoms… Six weeks after her last child was born she began stuttering having balance issues , swallowing problems and complaining that her eyesight wasn’t right, then began falling which led to an MRI that was normal, was then referred to a neurologist who said all her symptoms didn’t fit into one box and so diagnosed her with conversion disorder and referred her to a psychiatrist. After having many tests and seeing many neurologist who also said conversion disorder she did lots of research and learned that all her symptoms most certainly do fit into the ataxia box. She does have nystagmus as a result of ataxia We live in NC and she is now seeing a motion disorder neurologist at Duke who said she does have ataxia .She has had genetic testing with no conclusion of inheriting this. The only treatment she has had are PT,OT and speech therapy To my knowledge there are no ataxia specialists any where close to us nor any clinical trials. I Would like input from any and all to help my daughter and am glad to whatever input I can offer to anyone suffering with this awful thing called ataxia