Yes AnnieB3 Mayo did the 3 tests you noted (blinding...and so on). I do have the lab sheet. When I discussed this neuro recently with one of the MG Assoc heads she said it did sound like she didnt know much about MG. TO not turn off other docs but to get to a different doc I have said that I am sure she is good at neuromuscular issues of other sorts but I dont think MG is one she is very familiar with. When I showed my top notch internist the record from the eye doc that diagnosed my eyes with MG in May she agreed to refer me to someone else. My neuro virtually ignored it. This eye doc was from a special eye disorder clinic not just a doc in box.
So I see this new neuro on Nov 2nd. My internist and pulmonogist are very on board. My pulmonologist called to assure me he gets how sick I am and had come up with additional tests to do to be sure it get sorted out with no more delay. I have been in contact with him more this last few months as my breathing has been alot worse. I am hopeful........but I realize today I have become numb trying to deal with more intense level of illness.
Annie59
Quote:
Originally Posted by bluesky
Mine changed. I had two positives at Mayo in 1/09, 1 negative at ARUP labs in 11/09 and another negative at an unknown lab in 3/10. I have something strange going on though because my symptom pattern is like that of a Musk patient though I test positive for the AchR binding antibodies (and the titer on that was low). Notice also that my pattern was backwards: my first tests were positive and subsequent ones were negative. Thanks to the good advice of this board I didn't take mestinon or anything else that could affect the tests.
Just my opinion: I think they say they know a lot about this disease and I think they actually know very little. And I think there are a lot of people out there who have the disease but don't fit a typical pattern and so don't get treated.
Also, I've had two negative and one positive single fiber emg. That test, though, I really believe is completely dependent on the experience and skill of the neuro who is doing the test. The first neuro was well meaning but inexperienced, the second neuro was a moron, the third was a brilliant guy who had been doing the test for decades.
A.
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