Hi Ally,
Sorry to have to tell you this, but sometimes the dx is given, then taken back, then given, then questioned over and over - especially when there is something overlapping to confuse things. That's what happens with me. The problem is that other diseases can cause many of the same symptoms as MG - weakness, breathing difficulty, etc.

I was amazed at all of them once my new neuro started looking at everything again and I started researching what she was looking at. I personally don't have any doubt about my MG dx (based on RNS and positive Tensilon), but I am anti-body negative.

With you testing postive for the anti bodies, I'm not sure what the issue is either. I can't wait until you see the MG specialist, but make sure you don't smoke for 24 hrs before, drink coffee for at least 4 hrs before, or take your Mestinon for 24 hrs before any EMG, SFEMG, or RNS tests. I had normal EMGs all but the one I was dx'd on. That was the one I didn't have any of the above because I was in the hospital and the test was so early that I hadn't had any coffee yet.

The neuro you saw in the other state is questionable, since he said that MG doesn't fluctuate! WHAT?? They do, day to day, even hour to hour! Neuros that deal with MG know that! That's why I get frustrated when they have you set an appt that is a month out, you walk in having a "good day", and they say you're not weak enough to have MG.

I do want to caution you though, about seeing a doc that isn't a specialist in MG. Their notes become a part of your medical history, right or wrong in their dx, it's still there. That can create more problems for you, because they seem to feel that can mean you're jumping around trying to find someone that will tell you what you WANT to hear (like anyone WANTS to have MG!!!!). They don't seem to understand the frustration of not having a firm dx, and start looking a psychologic reasons for the symptoms.

I hope I have worded this well enough for you to understand that I know very well why you are trying to find someone to help you sooner, it's just a warning about how the medical community may view it.

I'm glad you have found an advocate in the sleep specialist. Hopefully that will get things moving a little more smoothly for you.