My eyes tested positive as I have severe double vision and some worse drooping as of a major flare in March. I waited till May for testing at a highly respected clinic in my town. The doc was so positive and said of course this is MG it is obvious. He sent the info to my neuro and said I should be seen in a month. That didnt happen. She is at the teaching hospital an hour away I am primarily treated at. She is young and it occurred to me has no idea how widely respected this clinic is. That place does research And writes text books!! She has acted like it never happened. My most recent talk with her asking her for prostigmine to try she said see some for coping cause this is it. When I tried to protest she whined "but youve had so many tests....."
She is useless. I did get news (sorry if I am repeating myself) that I have gotten an appointment for a second opinion with a differnt doc tho it is at the same place. My internist wanted me to go to Mayo as my records would not need to follow me. She would pick out the best and write an overview.
I have been to Mayo and it was a very every painful experience. I had a neuro ( would mention the name but dont know if thats allowed here) that I wouldnt take a cat to much less wish on anyone else. I did have a GREAT pulmonary doc there that discovered that have paralysis in my diaphragm. Him I love. The neuro up there said his finding meant nothing. Lat year after 2 hospitalization in July I called him and wrote a whole new report. It got things rolling again. I will share his name if anyone wants it. I am forever greatfull to him. My breathing is so poor.
Annie59
Quote:
Originally Posted by Stellatum
Hi, Annie. There are a lot of us around here who sure do know what you're talking about! I keep telling my neuro that my legs are only very mildly affected, and he keeps testing my legs and telling me he doesn't think I have MG because the tests are only mildly abnormal. He won't test my side and back muscles, which are my main problem, because it's evidently unknown what normal test results for those muscles look like.
It's exactly like the old joke. A guy is on the street corner under a street light searching the ground for his lost watch. His friend says, "I thought you lost it on the other corner!" He says, "Oh, yes, I did, but the light is better over here."
We all wish you the best--hope your landlords and your neuro both start to see reason. Hang in there.
Abby
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