It is so good that we are listen too, it is lonely not being in the driving seat trying to get the good news of a cure. My trust is in the hands of greater under standing of the great leaders of N A F fore front.
so how/where do you get genetic testing? I was diagnosed years ago with late onset cerebellar ataxia at a neurology clinic (I had originally been sent to a neurologist there who specialized in MS), sent to therapy and sent on my merry way. No explanation, no nothing other than "you still don't have reflexes in the right leg and reflexes in the left leg are degrading".
Me too no help by the medical prods just to go home snd get o xwitb jt. I don’t know what type of ataxia I have nothing specifically on mri. Nerve testing normal. So what do you do? Thank goodness fir de google. Anyone had stem cell therapy? If so what improvement if any? My neurologist said spend tge money on something meaningful. Hell I don’t get out much etc no meaningful life any more!
It is so good that we are listen too, it is lonely not being in the driving seat trying to get the good news of a cure. My trust is in the hands of greater under standing of the great leaders of
N A F fore front.
Geoff Bosworth SpinoCerabeller Atropy type two
so how/where do you get genetic testing? I was diagnosed years ago with late onset cerebellar ataxia at a neurology clinic (I had originally been sent to a neurologist there who specialized in MS), sent to therapy and sent on my merry way. No explanation, no nothing other than "you still don't have reflexes in the right leg and reflexes in the left leg are degrading".
Me too no help by the medical prods just to go home snd get o xwitb jt. I don’t know what type of ataxia I have nothing specifically on mri. Nerve testing normal. So what do you do? Thank goodness fir de google. Anyone had stem cell therapy? If so what improvement if any? My neurologist said spend tge money on something meaningful. Hell I don’t get out much etc no meaningful life any more!
How do you get tested when the insurance company won't pay for testing because there is no cure or treatment???