Anybody have ataxia?

Hi Mimi. If I remember correctly, you posted before about being diagnosed with paraneoplastic syndrome? I suffer the same syndrome and if your diagnosis is still the same, my symptoms did get better after several plasmapheresis treatments. Not gone, but better. I hope you can find some relief from the symptoms. I feel for you.

Mimi, just wanted to add, before being tested for PNS, I had an MRI to rule out Syringomyelia, which apparently, causes many of the same symptoms. Wondering if maybe it's that. Good luck to you at the Mayo. Hope you get some definitive answers.

Hi Mimi. Doesn't it just suck? My MRI's where negative for anything that could cause that kind of neurological damage as well. I have mets on my spine, but not in the fluid and I have a brain met, but not in an area that would cause the myriad of problems. The only thing that seemed to fit was the PNS, based on the blood test. I've often questioned that diagnosis as well, because technically, if the antibodies were removed via plasma exchange, I should have seen significant improvement and that was not the case. It got slightly better, but the majority of symptoms remained. A cardiologist I had seen lately surmised that it's damage from 18 years of treatment. I suppose all those cumulative toxins could have had an effect. To be honest, I don't think anyone knows the cause, but since I got the PNS diagnosis and have been treated for it, that's what I have to go with. Everyone asks why I can't walk, balance, can't use facial muscles, shake and can't see so I have to say something. It's a little embarassing to be so spastic. I just wish all these specialists could connect the dots and fix it. Have you met with the Mayo yet? Hoping you get a definitive answer.