Oh, Tracy, I can't even believe it.

It's as if neurologists can't believe a patient can have more than one thing wrong with them. Lyme disease does not cause a positive antibody test! How unscientific is that. He may be sending the antibody test to Johns Hopkins or Mayo. They'll often do that. They certainly don't feel it's necessary to tell a measly patient what they're doing and why.

The other thing neuros do is keep on redoing a test that has been done. They learn this from places like the Mayo Clinic, who believe the way they test for antibodies is the only way. And, at least to me, it's like they are stuck in the "peek-a-boo" phase of doctoring where they only believe something if they SEE it. And if they "control" it.

Regular EMG's are sometimes positive in those with MG, however, why would you want TWO EMG's done when one will suffice?! It's like they are giving those in the EMG field more business so they can get more money. It's certainly not logical. It may be because no one in your area does a SFEMG. Did you ask him why not a SFEMG?

You can always say no to tests. If it were me, I'd wait until the antibody test and the other ones come back and then ask him to be sent for a SFEMG. Say something to him like "I respectfully request to have a SFEMG done instead of an EMG." If he asks why, you can say "If the EMG is negative, I'll have to have the SFEMG anyway and that's two times I have to endure pain instead of one" Geez, do we really have to explain this?

You are in control of this process. It may not seem that way but take back your control then. See what the tests are, get copies and say you will have to get back to him. It's not about what they'll "let" you do. It all depends upon your insurance and if you can go where you want to.

PLEASE don't let stress add to your situation. You are finally gaining a little ground and you don't want to go into a crisis. I know that's easier said than done but have faith that this will all work out. If you were a man, they probably would've increased your IVIG right away and recommended a thymectomy. Sorry, guys, but we women are treated so damn poorly. Not all the time but a lion's share of the time.

Tracy, it's your life, your decisions, your body and your health. YOU are in charge of it. I know you don't feel too "powerful" after the mistreatment you've had, especially in the ER's. It's very obvious that you have MG.

So take a few small deep breaths and relax. Do something fun, like sleep.

You are in a tough situation. You want a solid diagnosis but you also need treatment. You are having IVIG, so it's hard to say what the antibody test will show. You can't go off of treatment to "prove" something that has been proven but you really should have a SFEMG so no other doctor does this questioning crap.

You guys have like, what, 5 feet of snow? I'd say wait until warmer weather but you can't afford to. It would be great if you could go somewhere like Johns Hopkins or somewhere else that has an MG expert. Anyone know of any in her neck of the woods?

Hang in there. I know how tough this is. I honestly believe things will work out okay.


Annie