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Thread: Some interesting news

  1. #1
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    Default 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

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    "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...

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    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?
    Marla

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    Marla,

    Did you have a biopsy of your malar rash? I've read that can diagnose Lupus.

    Hope your answer comes soon,
    Oluwa

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    Thanks, Oluwa,
    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!
    Marla

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    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.

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