sounds like a good plan to get yourself to the ICU!

just in case I would also add running around the block a few times, and then doing some weight lifting! and have them take you in an ambulance to the clinic.

sorry, for my sarcasm, but I just find it hard to believe that in the 21st century people have to think how to make their tests (which don't have an accuracy that is even near what some of their physicians assume) "diagnostic" , in a way that might put them at risk.

the true accuracy of the SFEMG in seronegative/MuSK patients is not known.
there are some studies that suggest that the sensitivity is around 50%. (which means that the SFEMG will be no better then tossing a coin!).

I have severe generalized MG with a repeatedly completely normal SFEMG done by the best neurophisiologists, even when I was in a near-crisis state, and required respiratory support during the test.

the only "diagnostic" test I had was done by a person who did not know how to do it properly, so it was falsely positive .

but, I can understand the way you feel.

I remember that when I had a cardiorespiratory stress test, it happened to be scheduled on a relatively good day. I knew that on a day like this I would have a completely normal neurological exam, and normal everything. so, I told the pulmonologist that it may not be a good day to do this test, as I am doing so well. he said that this is good because he wants me to be able to do the test.

when he got the results of the tests, he told me he wants to repeat it, because he could not believe I was so ill, since I was working full time then. at some point (after my neurologist at that time kept on insisting that I could not have any known neurological disease) he even asked me if I was not "injecting" something before coming to see him when he got the same results again.

the same thing happened when I had "objective" respiratory tests, after every neurologist that saw me thought that I was not "putting enough efforts" when doing the effort dependent respiratory tests (one even showed me how he can "easily" get a reading of 1.5 on the vital capacity, by making it look as if he is blowing as hard as he can. I have to admit that I am constantly impressed by the artistic skills of some of the neurologists. I guess this is why they assume that their patients have similar capabilities).

in any case, I told that pulmonologist that I am doing relatively well, and then how will we be sure of the results. she reassured me that if there is a problem, it will be seen. I have to admit that I was quite skeptical about that, and when she came in the morning to discuss the results of the over-night test, I was sure she is going to tell me that I am fine and there is nothing wrong, and I am just using my respirator because it gives me psychological relief. (it's hard to believe what kind of BS I was told, and it was so far fetched that I believed it, as I couldn't imagine a physician could make up such nonsense).

I was not at all prepared for what she actually said...

she told me that I had significant fatigable weakness of my respiratory muscles, which explained all my "obscure" symptoms, and fully correlated with the "unreliable" results of my effort dependent respiratory tests.

to cut a long story short- it is your physician's responsibility to diagnose your illness correctly,and understand the limitations of his tests, not your responsibility to make them diagnostic.

just like you would not expect someone with chest pain, to run around the block so that his EKG will be diagnostic when he comes to the ER!

alice