Quote:
Originally Posted by alice md
It was a tensilon test, and it was in the hospital. It was a teaching academic hospital, and that was why my friend could easily get him to come and see me after class. I always say that I had the most rapid diagnosis possible (before I even realized I had any symptoms) and the most delayed diagnosis, 20 years later when objective evidence for my illness was finally found.
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Alice,
How similar parts of your story sounds to mine. My first symptom that I noticed was actually double vision. The neuroophthalmologist I saw said it was definitely MG--he was quite sure, but then the antibody test and EMG came back negative--so he dropped the whole issue and basically said that there was no way I could have MG, unless is was just ocular. He said it was probably a congenital 4th nerve palsy.
I went about my life and just thought my heavy arms, legs, and double vision was part of aging. I even ended up in the ER with what was probably a MG exacerbation--extreme weakness, increase dbl vision. This resolved somewhat after resting in the ER all evening. Though sxs continued for 7 years before I was diagnosed by tensilon test and response to mestinon, I had the occasional neuro tell me that it probably was MG, but there was "no decent treatment" for it anyway. So no treatment is what I received until about 18 months ago.
I've had to retire b/c I was unable to work due to my double vision and unpredictable other symptoms. I do feel better since retiring, but I feel that I've lost a lot with the delay in treatment. I thought 7 years was a long time to wait for treatment--I can't imagine 20 years!
Cate