You've all had great posts.

And what if that patient is on steroids, like Advair, which make MG "disappear" and the doctor does not even bring that up? There are so many variables in the diagnostic process, as you all have brought up, that a GOOD neurologist should be able to put into perspective.

This is one of my favorite quotes, and way of thinking.

“When you have eliminated all which is impossible,
then whatever remains, however improbable, must be the truth.”
Arthur Conan Doyles’ Sherlock Holmes

I had two SFEMG's done by an MG expert. The first time I wore myself out a bit and it was borderline. The second time I didn't wear myself out and it was negative. Again, I think either my normal jitter is "below normal" or my weakness doesn't "go downhill" until I wear myself out. And when you have a SFEMG, you are just lying there. What if the whole autoimmune process doesn't get "revved up" until you are moving around? AND I am on Advair and the Flovent in Advair goes systemic. A steroid is a steroid.

I have very obvious ptosis and other clinical weakness. I had a positive Tensilon test (only 2 mg. needed to diagnose) and respond dramatically to both that and Mestinon. And even though I didn't find out until 12-28-08, I have positive AChR antibodies. So, because my SFEMG is only negative to borderline, do I NOT have MG?!!!

If you saw my "before and after" faces, with the lines I have drawn through them to compare them, you would know I have MG. Why aren't doctors using ALL of the tools that would diagnose an MG patient? Like cameras. Like PFT's off and on Mestinon? Like exercise EMG's?

If it's so hard to find something, then you need all the clues and tools you can get to find it, damn it.

And if doctors would get their "fear" of being sued out into the open, then it would evaporate right before their eyes. All we patients want - most of us - is to feel good.

It took my entire life to be diagnosed (had "lazy eye" diagnosed at age 10 when it was really fatigable ptosis). And it took from my discovering my ptosis in 2000 until 2001 to get diagnosed, in another state. And then none of the neurologists in my state helped me because the first one I saw screwed up in 2000 and got the "word" out that I was fine so he wouldn't be sued. Who knows what else he said - though I do know it was not pleasant (from a recorded appt. from one of his neuro pals).

I'm so sick of all the childish games, inability for neurologists to do their jobs well and to treat all of their patients with the respect they deserve that I can hardly stand it anymore. I have PTSD from this, and other life-threatening medical experiences. If they can't figure something out, why do they give up? Why do they then blame us? Or, like you said Alice, label us with some damn pseudo-psych or psychological illness. In the meantime, we can't work, pay our bills or do anything because we aren't well.

I almost can't talk about this issue it upsets me so much.

Annie