Originally Posted by Stellatum

Stephanie, it's interesting that you saw a GBS expert, because he would know the difference between MG and CIDP, which is a chronic form of GBS.

I was in your position for a while. My doctor recommended a neurologist but I couldn't get an appointment for three months. Meanwhile I went to the ER during an especially weak time in the hopes that the resident neurologist could speed things up. It didn't work for me, but it might work for you. The reason it didn't help me is that my symptoms at the time were not typical of MG and no one so far had even suggested I might have MG. The neurologist at the hospital checked me for brain lesions, saw I wasn't in any immediate danger, tested my blood for whatever she could think of, and sent me home to wait for my neurologist appointment.

At one point I was already a patient of my current neurologist, and he was unable to diagnose me (I am seronegative and my SFEMG's weren't conclusive). He was planning to just keep seeing me every six months. I made an earlier appointment just to tell him: I'm getting worse. I can't live my normal life. We have to do something, and we have to do it immediately.

He responded very well to that. He sent me to another neurologist, in a different city, with a reputation for being able to diagnose difficult neuromuscular diseases, and that's how I got my diagnosis.

I don't know if a similar strategy would help you, but I'm telling you my story so you can consider your options. I'm so sorry you're in this position.

Abby