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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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04-19-2018, 12:04 AM | #1 | ||
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Went for an EMG today, big name doctor at a big name place.
They started with the shocks on my right arm. Several test shocks to set the strength. Then 10 rapid fire shocks in a row. Relocate some things. repeat shocking. Then they taped my fingers loosely together, and had me strain against the tape for a full minute to tire out my muscles. But then they had me rest it, relaxed, for at least another full minute before repeating the shocks. What good is tiring it if you then rest it before testing??? Then they did my face and around my eyes, with the shocker at the back edge of my jaw/cheek. And moved things and repeated. And had me squeeze my eyelids shut as tight as possible to tire them, but then had me rest them a full minute before shocking again. Then moved the electrodes and shocked again. So, that was four full rounds on the right side of my face. Not seeing any difference, they then repeated all four rounds on the left side of my face. about 3 shocks to set the level, then the ten in a row. move things. repeat. move things repeat....... Then they redid it again on my left arm, four rounds. Is it really reasonable to expect to find different responses on different, adjacent, facial muscles? if nothing is showing the desired responses (mg symptoms), do you really keep trying and trying? do you really do the left side if you get nothing on the right side??? From what he said after doing this to me, I now strongly suspect he was just collecting data for his research center. He very clearly has no concern at all with figuring out what is wrong with me if it isn't MG, which is what he is leaning towards, although he won't say until I get a couple more blood tests done (LRP4 and another one). Then I am supposed to come back for a summary visit where he will tell me his declaration. Asked, if the last blood tests are negative, is there something further to investigate, will you still try to figure me out, or are we just done? and he refused to answer. Said I had to wait until the final visit. (which ain't gonna happen. I am done with him. Too much more went on to explain here, you would understand if you were there and heard it.) But I am really wondering about all the repeat runs on the EMG. No one has ever done that to me before. Is it really reasonable to keep trying different, adjacent muscles to try to get an mg-like response, to try left and right sides over and over, or was he likely working on his own agenda, not my health? |
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"Thanks for this!" says: | AnnieB3 (04-29-2018) |
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