Barb, Do you try to figure out the end of a movie when you start to watch it?
The main concern is whether you can swallow, breathe, or move well. If any of those become worse, you need to dial 911.
Mestinon syrup is sometimes better for those with swallowing issues. And you can titrate it more easily.
If you said what area you live in, someone might be able to direct you to a MG expert!
I think you should try to relax as much as possible. But that's only my opinion after having MG for 56 years.
I've read just about everything I could find in libraries/books and the Internet on modulating antibodies and MG (in general). Unless you have autoimmune liver disease (have you had a metabolic panel done?), I doubt that you don't have MG. There are cases where someone only has a thymoma causing antibodies and when it's removed, the MG goes away—but that's rare. There are some LEMS patients who have positive MG antibodies, too.
Also, some antibodies are tissue bound and some are circulating antibodies. Maybe the binding aren't circulating or maybe you are one of us who has ONLY modulating ABs. The only reason that doctor doesn't know what to make of that is because she's not a MG expert. Most MG experts get this simple fact.
This waiting around for doctors to deem you worthy enough to have a diagnosis is rather silly. But what else can you do? You either seek out a MG expert or wait until this neuro finds time for you.
Until then, live your life as best you can. I know that it's overwhelming to stare down a disease and you probably have loads of questions (write them down!). But maybe you need this time to sort it all out and figure out what having MG means to your everyday life.
Again, if you get worse, don't hesitate going to the ER.
Do you talk a lot? If so, those swallowing muscles will just keep getting worse. The more you use weak muscles, the less you can use them!
Annie
http://www.clinchem.org/content/56/6/1028.full
http://www.mayomedicallaboratories.c...vis/7b-15.html
Read the section on modulating antibodies. Modulating ABs also reflect blocking antibodies (a test they don't do anymore), although I believe it's still available. They also changed the ranges for the modulating antibody about two years ago, making it even harder for "borderline" numbers to confirm MG (how sweet of them).