Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 05-26-2013, 12:18 PM #1
Unsure81 Unsure81 is offline
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Join Date: Apr 2013
Posts: 81
10 yr Member
Unsure81 Unsure81 is offline
Junior Member
 
Join Date: Apr 2013
Posts: 81
10 yr Member
Frown Help!

I am really struggling here - my neuro has decided my one sided facial droop and ptosis is not muscle weakness and just "me". He says he has seen Myasthenia and I don't fit despite my sending him hourly photos to show how both symptoms fluctuate throughout the day with activity/rest and also a very dramatic improvement after a 2-3min ice pack test. The only test for Myasthenia I have had us the AChR antibody test which was negative. I experience intermittent problems with chest pressure/breathing and legs feeling weak/like I've run a marathon and my knee giving out causing the "duck limp walk"! And occasionally my upper arms. Admittedly, I have always been (typically!) good when I've seen him and have done well on those resistance tests but at home my thighs will tremble if I lift them when they are bad and generally not want to work!

He now wants to see me on Tuesday, late at 6.45 and said to arrive early and do whatever I can to aggravate my symptoms so he can see for himself - I feel like I'm on trial to prove myself

So my questions are:
How good are those resistance test in indicating MG?

What would be a good 15min exercise? I'll try to be as active as possible before but I'm not looking forward to making myself feel rubbish

My neuro is easily 60 and very respected, he says he has seen Myasthenia so maybe I am wrong and this isn't my answer? Or maybe he is old-school and wants a positive test/or to see things a certain way? He has refused to do an EMG/SFEMG until he sees what he feels is weakness?

Thanks again for all of your help - any advice would be greatly appreciated
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