Here ya go Moshe,
Always Happy to help on a survey for you.
Kathy 4
those that are Sero-Neg to AChR & Sero-Neg to MuSK.
Questions:
1. How old are you ? 46
2. Do you have a confirm diagnose of MG ? yes
3. How did you got your diagnose ? tensilon test/ enlarged thymus/
positive EMG/ clinical by Neuro / clinical by MG eye specialist (clinical
meaning; by their observation and limited testing in the exam room) just
as you listed...
I tested negative for the antibodies and negative for Anti-MuSK antibodies
4. How long do you think you had MG before you got your diagnose ? 3 years, Dx with asthma and trouble with daily walking exercises, continued with droopy eyes lator on.
5. Did you hear from some doctors that you don't have MG ? Yes, my
primary doctor denied what the Eye specialist was saying and thought I should
wait until I see the Neurologist. The one only confirmed the other.
Before dx I was told to see a psych doc. I eventually replaced my primary
care physician with a more knowledgeable Doctor on the subject of MG, the other
one didn't even open the Physicians Guide to MG that I sent her...she was of no
use to me with limited knowledge.
6. What MG symptoms do you have ? Generalized weakness at times, droopy
eyes, difficulty with breathing during weak moments. continual weak neck
muscles.
7. What drugs/treatments did you try that didn't helped you ? Imuran /
Prednisone / Cellcept
8. What drugs/treatments do you take that helps you ? Plasmapherisis in the
past / IVIG / Prograf (tacrolimus)/ Mestinon / have taken neostigmine IM (shots)
9. Do you think some times that perhaps you don't have MG, but something
else ? No
10. Are you confidence that you have MG but they didn't yet found the
correct antibodys in your body ? Yes, I'm assured by 3 doctors about
this!
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http://myasthenia.puhs.org/
Wednesday, August 09, 2006