Well, she didn't know enough to run the entire Acetylcholine Antibody panel. You should've had binding, modulating and blocking antibodies done. And did she send it off to Mayo or somewhere equally adept at the test? Quest Diagnostics is often "wrong" when running it.

http://www.aruplab.com/guides/ug/tests/2001571.jsp

3% - 4% of MG patients only have the modulating antibody, which she would know if she were an expert. I am one of those few.

I should add that different labs have different determinations of what is positive. This lab, for example, has an "indeterminate" reference range for the modulating antibodies while the Mayo lab does not.

There are other drugs that can affect those tests, like Advair or Flovent. Any steroids will. And IgG deficiency will affect them as well (they would be lower or negative if you had a deficiency and did have MG AChR antibodies).

With a disease like this, it's always best to be diagnosed by an expert, or have it ruled out by an expert. You can always have a "regular" and nice neuro follow you after that.

Anie

I don't think she sent it anywhere. They took my blood Tuesday morning and I got the results Thursday... How does one go about finding an expert? I mean, I definitely want to go to somebody who's going to figure this darn thing out. But all I know to do is go to who my family doc refers me to. Do you think my family doc could run those tests? I don't want him to think I'm a hypochondriac for finding out about this stuff... I need someone on my side.

All we need to know is where you live or what major city you are nearby. Or if you don't want to, contact the MDA: www.mdausa.org

It's good to be cautious with any doctor when getting a 2nd opinion. They often get insulted by that, even though they publicly swear it's a good thing.

I live in Spartanburg SC. If anyone wants to hunt me down, I don't run very fast...