Spino Cerebellar Ataxia

Posted by katetikey @katetikey, 6 days ago

Hi, I’m Kate, Retiree from New Zealand. I was diagnosed with SPINO CEREBELLAR ATAXIA 5 years ago. Over time, my symptoms have worsened, it is increasingly challenging for me to navigate daily life. I would love to connect with others who truly understand what its like, as it can be a very lonely place to be.
I’m here to share my experiences, learn from others and explore different treatment options that might help manage symptoms. However long you have had this condition (or similar) I would love to hear your story and to chat.

Looking forward to hearing from you all!
Kate

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

stevegrinstead | @stevegrinstead | 5 days ago

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.