Has anyone had spinocerebellar ataxia, and gotten better to only have it return. Doc is puzzled by this… Going to Hopkins in next two months to see what is up. Any SCA types that would do that. I imagine i will be tested for them, thank you!
This would be a scary condition for any of us.I wish you only a positive out-come as I'm sure the Hopkins Center will test for every-thing..I've read your other posts and I'm sorry this has happened..We all hope only for some resolve,soon!
Your friend, Ozzy..
Have you read about Episodic Ataxia? That sounds similar.
Thank you Ozzy and AJ, I will look into that!
I know its a bit late and I'm sure you have read up on Episodic Ataxia by now, I have EA2 a form of it and can have attacks weeks or months apart leaving me almost back to normal in between.
It can be scary but although like all Ataxia's it can be degenerative it appears to be slower because we are not constantly suffering (although it can feel as if we are at times). So I take that as a positive.
I hope you get some answers and are feeling better
Hi Debra, how long do your attacks last? My first one lasted 9 straight months and had major autonomic dysfunction as well. I went about a year in which my only symptoms were severe nausea and then the spasms hit again in January, but this time spasms are much worse and vision issues are involved. Waiting on an appointment at Johns Hopkins, so hopefully I will get some answers. Thank you for any input. When I looked it up it made it appear this form only lasted for hours or days, not months as mine has, which is why I was curious.
The first one was for 4 months and then regularly ever 4-5 weeks lasting a week at a time, then finally they started me on Diamox and it was an almost immediate improvement. I've had 2 bad attacks lasting 3-4 months over the past 2 years but other than that the ones I get are almost daily but so weak that I can still function on through them.
I suffer with terrible muscle spasms in my legs mostly, with my right side being worse. My right arm also goes numb and becomes weak with an attack. Vertigo and brain fog are also some of the lovely symptoms that hit me too.
Different types of Episodic Ataxia last for different time periods, I've found that talking to people with it I've learned so much more than the consultants can even tell me.
There is an Episodic Ataxia Support Group on Facebook with lots of very helpful people as there are on here but its more specific. It might be worth you looking for it and asking to join.
Good luck x
Thank you Debra, I will look into that Facebook page. I sppreciate all of your valuable feedback!