Spino Cerebellar Ataxia

I also have cerebrospinal ataxia. It’s a symptom of SS. One of many. I had a leak in my dura which caused iron deposits to damage my central nervous system including my cerebellum. Dr. Marsh at Mayo Minnesota was able to locate the leak and sewed it up. But I still have the iron deposits so I still have SS and ataxia. I hope and pray the best for you.

Hi Kate, @katetikey
I've got SCA too. Mine is episodic so the symptoms come and go but in the last 5 years, I've gone from unassisted walking to needing a walker to borderline wheelchair.I spent over a decade trying to get a proper diagnosis.
I know the pain and the feeling of isolation because it's a personal experience. However, I will say that most neurological disorders and diseases are personal. That being said, I fully understand. I'm sure that you've heard all of the usual "keep your head up" or "keep moving" speeches just like I have but, this,to me at least, is like a slow motion train crash. I know what's going to happen but I have to stand by and wait in fear or nervous anticipation for the next step or downward spiral. This journey has been difficult but I've learned to live with it as best I can.
As for symptoms, I've been battling poor balance, fine motor coordination, nystagmous, and now mental impact. I'm on a couple of different medications and they definitely help with the eye movement issues.
Do the best you can every day, it's become my mantra and it keeps me going. If you ever feel alone, know that you're not.