Ally, I guess I better clarify that "don't do anything the day of" thing!!! It's just that Rach is so bad off. If she pushes the day of, she may not make it to the appt.! With MG, you can push the day before and it can show up the day after. It's absolutely true that the results are better if you can wear out your muscles. That's one reason I've always wondered why they don't make patients do an post-exercise SFEMG. They do that in some parts of the world, like Sweden.

It's amazing how they change the MG "rules" to fit a situation, in order to make it look like we are malingering! No, the antibody is the Gold Standard; No, it's the SFEMG. You're fine, just go home and laugh. Or sleep more. Or get over some childhood trauma. Or anything else that is unscientific. Like you said, a negative doesn't prove anything - only a positive does (as my MG expert neuro, who is great, says).

Annie

"I really think we need to get together somehow and kindly, clearly, firmly speak up. Really! Because we fellow mg'ers are the missing link!!!! "

I fully agree with that. but, we have to find the right way to do it, so we will be listened to.

alice

Hi all, boy, it's so hard to read 'bout the responses you are getting from the neuro "specialists".....just saw my neuro for check-up again, & he is STILL uncomfortable with my dx of MG....all the antibody tests are negative, & I told him that many of you are also seronegative but still are diagnosed with MG...the only criterion I have is a decremental EMG, & he still hesitates...whatever else would cause this??? & my clinical signs are positive, but they never see that...app'ts are always in the A.M. & even if I don't take the Mestinon, he doesn't see it, & without bulbar signs he's not convinced...I sure wish there was a better way to clarify things, maybe another decade or so....sooo frustrating...guess at my age I should be grateful to be somewhat functional, but I sure do miss my vocation & my horses...(wonder if a muscle biopsy would elucidate anything?)

Dottie

I wanna CRY!!

Oh, Rach, sweetie, HOW HORRIFIC!! I've got an artist friend on the Isle of Wight (hope I spelled that right) who has lost the sight in one eye -- and is threatening to lose the sight in the other (TREATABLE optic tumor) -- just because of stubborn, foolish, pig-headed, IGNORANT "mess" like this!!

Never having HAD the EMG or SFEMG, I don't have any advice. Well, maybe.......do you have pets in the house? Are they treated with any insecticides or pesticides? Has your house been recently treated for bugs? Anything like this "might" affect your results -- Mestinon, pesticides, and insecticides all basically act on our systems in a similar fashion.

I feel TREMENDOUSLY blessed today -- having been diagnosed ONLY on symptoms and on positive antibody tests (AChR) -- and, I guess "reinforced" by the fact that Mestinon works for me. *sigh*

Third World?? HUMPH!!! "Old time" medicine seems to be far more humane!!!!!

When I had my EMG and the other electrical stimulus test (I forgot the name just now) the doctor asked where I was the weakest. At the time it was my right hand and left side of my face. My right hand and left side of my face were tested. Made sense to me.

Maybe you should talk to the doctor performing these tests about your concerns. It makes sense to test the weak muscles since we all have different muscles that get weak due to MG. What point is there in testing a muscle that works fine?

I just gained understanding as to why my doctor waited until after these tests to prescribe Mestinon to me. I don't know if I could stop taking Mestinon to "prepare" for a test at this point. Mestinon is such a life saver and I would be afraid to stop taking it.

I hope your test goes well.

DOTTIE!!!! You are in Shiloh!!!! Where is your neuro?? Memphis, Jackson, or Nashville. We need to TALK!!!

Jana, I'm seeing neuro in Jackson...please yes, let's talk, do need the help...thanks..sent you a pm..

Well, Dottie, all I can say is how can he not see the obvious?

I think doctors are afraid of committing to a disease and then being wrong. It leaves them open for a misdiagnosis and resulting lawsuit. Stupid excuse for treating a patient poorly.

Annie

Does not the Hippocratic Oath say something like "first do no harm'.

Are not our Drs who are too woosy to diagnose us - "doing us harm". I am tired and I am angry. The next appt with the Neuro I am going to push the boundaries....

I was on steroids when I had my EMG last year. The first Neuro I saw took great care to prove me healthy. The second Neuro did not even spend 5 minutes in the room with me. I was never told that steroids could influence the result until a few months ago by another Specialist. I cannot come off the steroids - so what happens now ?

Do I go through a pantomine for this third Neuro ? And when I get a negative result ( as it will be ) what will this prove ?

I love your term 'frequent flyer', Rach ! That so suits us ... not that we want it that way.