Hi, Elonwen. Do you know what lab ran your tests? Sometimes that can actually make a difference in the results.

Mayo created the test and they tend to have more accurate results.

Antibodies fluctuate. Even from day to day. An antibody level does not necessarily reflect the severity of a disease.

Did they do the MuSK antibody test, too?

Did you have a thorough clinical neurological exam? If so, what did the neurologist say about that? If you had one, get the notes from that appointment. Sometimes they write things in their notes that they don't tell patients.

Early on in MG, antibodies might not be as present as they are later on.

Did they do any other tests, such as a RNS, EMG, or a Single Fiber EMG?

If your symptoms become severe, in that you can't breathe well, move well, or swallow, that's when you need to dial 911. If you have MG, it can become so bad (especially if you aren't being treated yet), that it can be life-threatening.

Don't let that scare you! It's only meant to be informative. Not everyone has a MG crisis. Until you get a diagnosis for what's going on, please take it easy. Rest when you need to. Don't push yourself. Keep from getting too hot or too cold, which can make MG worse. Get enough sleep, etc.

What else can we do to help you?

Listen to your body and trust your instincts. Get more help if you need it from your doctors!

Annie