Heriditary Spastic Paraplegia back in the picture
So, I went up to UCSF on Friday for my usual botox shot for the vocal cords.
The neurologists who deal with Spastic Paraplegia asked me to see them in the afternoon, while Jeff saw his urologist.
I had thought that they had ruled out HSP when I saw them in July, but they told me that they are still suspecting it.
Dr. Simon found a research group in Montreal who have some patients with symptoms like mine, so he's coordinating with them.
I gave them four vials of blood and he videotaped me walking across the floor. He's excited to find out if I happen to have the same flawed gene that the Canadians have found.
If so, they may have pinned down a new gene flaw in HSP.
He thinks that perhaps the AI diseases and the spastic leg muscles are two totally different problems - I'm just lucky enough to have both!
He would group the Spasmodic Dysphonia in my vocal cords with the HSP and the Meniere's symptoms with the AI symptoms.
I'm just a hot mess on many levels!
As all of us here have talked about before - I would just be happy to finally have some answers and a label for what is going on with my leg muscles.
I feel you on having a label for what's wrong! Having "some autoimmune thing" is not the most comforting thing in the world-- plus it's hard to explain to others, and your doctors are never quite sure about treatment. I'm glad you're getting (maybe) closer to some answers, and here's hoping I do, too, when I take my own trip to the teaching hospital.
Hooray for answers!