I can't believe I'm going to defend a doctor now. They have to do at least the basic testing for MG. I know it's painful. It completely sucks. Been there, done that too much. But they have to do it because while the antibody tests are specific to MG, they need to "see" with an RNS, EMG or SFEMG, exactly what the muscles are up to and if it is generalized MG. Why? Because you don't want to throw immunosuppressants at someone, if they need them, if they don't have MG. That has been done with some people with CMS, the genetic version of MG, which is not an autoimmune disease and does not respond to immunotherapy.

Doctors like to use more than one word for the same thing. It makes them feel smart. Abnormal does mean positive, just like normal means negative.

Sure, doctors sometimes don't have the ping-pong balls to make a decision but I think the way they are going about caring for your sister makes tons of sense. You can't start Mestinon until you get a positive RNS or EMG. However, if her clinical exam is positive for MG, she has the antibodies AND now her RNS is positive, an MG expert would be inclined to give her both the diagnosis and treatment now, at least in my opinion. Would a SFEMG be absolutely necessary? Maybe not. Especially since they think it's okay to wait for FIVE months to get it done. And she would have to withdraw from any meds at that point in order for the test to be accurate.

At her next appointment, she should lay all of this out for the doctor. Maybe she could say, "I have MG antibodies, fatigable weakness and a positive RNS . . . isn't that enough for a diagnosis of MG?" As she coyly bats her ptotic eyelashes.

They are getting somewhere for your sister. Some people have to literally wait years, 40 in my case, to get a diagnosis. So I think her doctors are doing pretty well so far. She needs time to let this sink in anyway, right?

Hang in there. If she gets worse before her next appt., either have her call her neuro or go into the ER, okay?

Annie