Kim, I've got to tell you that getting diagnosed with MG is a "crap shoot"!!

I was (praise God!) diagnosed with a positive AChR blood test more than five years ago. Since I look so "normal" (rolling eyes AGAIN, here) every new doc I see has insisted on running the test again. So, me -- THREE positive blood tests. I have PROFOUND clinical symptoms -- extreme difficulty talking, trouble swallowing, shortness of breath, neck and arm weakness, and intermittent double vision.

Recently, a routine neuro visit showed that the reflexes in my ankles were almost gone -- my neuro ordered my first EMG and RNS. During the RNS, I told the tech I couldn't lay flat on my back due to my MG. She didn't see my medical records and assumed that I was there for a diagnosis. After about a dozen zaps on my leg -- she asked me WHY I thought I had MG (in other words, she saw NO evidence). My legs are usually ok, strength-wise -- unless I am in exacerbation -- and I was NOT in exacerbation during the testing. My neuro did the EMG -- and I don't think he saw anything either.

So, I DEFINITELY HAVE MG -- but, apparently am negative on the EMG and RNS. Figure that one out!! THREE postive blood tests -- positive on blocking, binding, AND modulating antibodies -- I mean there is NO doubt that I have MG -- no doubt AT ALL!

So, just hang in there. Neuros talk about MG being the "most understood" of all of the autoimmunes. But, that is like saying the moon is the most understood of all of the planets -- LOL!!!

You really NEED to find an MG expert. I've got one -- and he is a saint. I've also got a regular neuro who knows an awful lot -- and who is willing to listen to the expert. (They did NOT go the same schools -- or are affiliated with the same hospitals. In fact, until my case, I don't even think they knew each other -- different cities.)

BUT, I went through a LOT of "frogs" before I found my "princes". Sad, but true. You will hear the SAME story over and over again in these forums. And, GREAT doctors are very, very busy. That is a "clue".