Some interesting news
Hello my friends,
I've just had an interesting afternoon of two Dr. appts.
I saw the neurologist, who informed me that once again, every one of my tests came back normal! He still swears that I have an ataxia, but it is not one of the "known" ataxias. Now he wants to refer me to a "movement clinic" at Baylor Medical school in Houston. I think that he still hasn't ruled out some form of Lupus, since he mentioned that they would also be very interested in my rash. My cheeks and neck have a very noticable malar rash.
I then went to see the ENT specialist who does my botox shots for the vocal chord dysphonia. He's quite convinced that I do have some kind of ataxia, which is causing the spasmodic dysphonia. He was very amused that I have an unknown one. He seems to think that Baylor will make me into some sort of test subject and is hoping that I will get a new ataxia named after me!
My hubby and I still wonder if it will all wind up still being a form of Lupus.
This whole diagnosis thing is a real pain!
"Marla's Ataxia syndrome" Hmm....has a catchy ring to it.
Gentle hugs dear, what a time you're having! At least they are paying attention -- which is a good thing...
My kids think that my last name would work better - "Dean's Ataxia". That would catch the attention of all the med students! Aren't all college Deans spastic, at least according to the students?
Did you have a biopsy of your malar rash? I've read that can diagnose Lupus.
Hope your answer comes soon,
One specialist that I haven't yet seen is a dermatologist. I'm thinking that might be a step that I need to take soon. The neurologist wants to send me to a "movement disorders" clinic at Baylor Med school in Houston. Perhaps they will want to check out the malar rash more carefully there. One can only hope!
oh. that sounds scary.
as exciting as it would be to have a disorder named after yourself......
i hope that they figure out what's going on with you. i'm going through a difficult diagnosis process and it's no fun at all.