Member
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Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
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Member
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
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I hate to say it, but I agree with Annie. Typically it takes 2 of 3 positives to dx MG - a positive reaction to Tensilon (Super Mestinon, but very short acting - I suppose they could see if the Mestinon helps in lieu of Tensilon since I hear they're not really using it anymore?)
the EMG or RNS indicating MG
and the blood tests for the antibodies.
I would also want at least the blood tests done to document and solidify the dx. If they are negative it doesn't preclude MG (I'm anitbody negative), but then the EMG, RNS or SFEMG should be done. You need more than just the exam and Mestinon trial.
Not to mention that if MG is diagnosed, there should be a CT scan done on the thymus gland. Thymoma's are fairly common with MG and need to be addressed if there.
I'm glad you like your neuro, and I'm sure you're sick of testing with all you've been through, but I too am concerned that this dx would be considered tenative by others, and not ordering the CT scan is down right scary.
All those cautions aside, you have to be very careful. Mestinon is not a cure - there isn't one. You can overdo on Mestinon and still put yourself into a crises if this is indeed MG. You need to slow down - Erin's doctor told her 80% of what she thinks she can do - I say 50% and slowly build in slow increments until you find a safe limit.
Please be careful, take your time and consider or discuss what Annie and I have cautioned.
Hugs to you!
Becky
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