I'm just adding my story here, to help you get an impression about how, shall we say, "fluid" the guidelines are.

I tested negative three times for the antibodies. I had three SFEMGs: first one border-line, second one mildly abnormal. My neuro wasn't willing to diagnose me with MG on this evidence, especially since my symptoms are atypical. So he sent me to another neuro who did another SFEMG (stimulated this time, and on my face), and declared that I have MG. My first neuro accepted his opinion.

As you can see, there's not much official about any of this. Even my "diagnosis" isn't official--basically, the doctors decided that there's enough evidence to assume, for the sake of making a treatment plan, that I have MG. The doctor who diagnosed me said he was "comfortable" with the diagnosis. When I asked him what other possibilities were on the list, he said, "MG is about the first four on the list."

Does that mean it's certain that I have MG? Nope. It means that the evidence is good enough that it makes sense to proceed on that assumption.

You will read here heart-breaking stories about people with typical symptoms and negative blood-work who can't get treatment. You will read infuriating stories about people with positive blood-work who still can't get treatment. We have at least one member with negative blood-work and a negative SFEMG who does have a diagnosis.

Abby