Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
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 :)
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 :)
Don't waste any more time..He may have seen MG before but you may be totally different.
Don't put your life in his hands.
Resistance testing is fine if it is to the limit and compared from one set of muscles to another.
Up and down the stairs usually did me in pretty well. In general when breathing and walking are in bad shape, other weak muscles have followed suit.
With MG, trust and communication are more than usually necessary because situations can change so fast, so it would seem no matter what the outcome of the visit, you need to find someone with whom you can relate and who has seen a wider range of MG. b.
The doctor needs to have a good understanding what you go though everyday. Give some examples; i.e. unable to do daily activities like bathing or brushing my teeth with out assistance or with great difficulty.
You can also find on the MFGA web site "MG A Manual for the Health Care Provider". I would recommend you read and take with you to the appointment the information provided in Chapter 7 Physical Therapy Issues.
I have seen one MG specialist who routinely sends his clients to Physical Therapy for strength testing. The testing takes 30 minutes and gives a much better report than a simple office exam resistance testing.
Wishing you the best.
Bruce
I agree with the others, you might want to consider a new doctor. It is so important that your doctor listen to you and take you seriously. There are too many issues with MG not to have one that knows how to treat MG and listens to his patients. Good Luck to you. I hope you get some answers soon.