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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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12-02-2010, 12:33 PM | #1 | ||
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Junior Member
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Tresa,
Here is a useful link you might find interesting both before and after the SFEMG for understanding and interpreting the results. http://www.angelfire.com/retro/micha..._fiber_emg.htm I go for my SFEMG and a redo of the repstim on Dec 17. Looking forward to the results, not to being off meds for 24 hours. |
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12-02-2010, 12:57 PM | #2 | ||
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Junior Member
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this reference http://emedicine.medscape.com/article/1832855-treatment does a very nice job showing the actual trace differences of the AP (action potential) recorded during the test.I plan on asking if i can review them with the dr while the testing is happening. my neuro was kind enough to do this. What I dont know if they will let me do if record pics of the trace on the equipment with my cell phone camera. Should have thought of that the first time...
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12-02-2010, 05:19 PM | #3 | ||
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Nan,
I had a brain fog moment, the post I was talking about is in Aby's response (Stellatum), she has posted the link before! Rachel
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You never know how STRONG you are, until being STRONG is the only choice you have!
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12-02-2010, 09:50 PM | #4 | ||
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Junior Member
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Rachel, yep I remembered reading that study as well. It has me a little concerned. I am also making sure to stay clear of caffeine ( affects nmj) and my adviar for about a week or so before hand.... maybe 2 ( which would be tomorrow). I do very little caffeine any more, but occasionally use it medicinally to get me through a dip when I need to be up.
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12-03-2010, 11:07 AM | #5 | ||
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Junior Member
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FYI- an update on the Mestinon before SFEMG discussion.
This all comes down to a lo of "know yourself and your body reactions". Since I have only really been consciously dealing with this since early/mid october, I know my reactions very little. I decided to experiment in the name of understanding, so I pretended like today was my SFEMG and stopped my meds yesterday when I am supposed to stop them in two weeks for the test. While I am seeing a difference, it is not really a full blown expression of what my body was doing. I can not push it further this weekend, due to family obligations and the ned to be together, but I am going to do the experiment next week again, stopping meds 2 days before the "test time" instead of 1 day. Interestingly enough, I am also finding I am very focused and noticing things about my symptoms I was not before. While my cluster of symptoms was not life threatening or paralyzing, they were fairly debilitating before mestinon. I am only about halfway back to that point right now. It will be interesting to see what next week brings.. and YES, I am being very careful- always mestinon at hand if I feel at all too bad to handle. I ust want to make sure that I have a good, clean test to get to the bottom of this. Thanks to all of you for your insights into prepping for this. |
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