Thanks, Annie! Thank you so much!

I agree that I do need a solid diagnosis. I need it for the emergency room, I need it for treatment, I need it so I don't have to keep going through the same nightmare again and again every time I see a new doctor.

The blood tests are supposed to be very specific and dependable. I read things like they "almost never give false positives" (from the MG Assoc) and false positives are very rare and have only some reported cases from other auto-immune patients, so I don't understand why I keep getting blown off.

Anyway, I went off of mestinon last night and today the whole right side of my face fell down. I took a lot of good pictures! Of course I'm finding it harder to breathe, but hey, breathing is for sissies right?

Now don't get too cavalier! If your breathing gets worse, you'll have to weight the benefit of looking bad for the doctor with the risk of having a crisis. You do NOT want a crisis!

I have discussed this antibody thing with Dr. H. It's very rare, like you said, for someone to have an AChR antibody if they don't have MG. And when you have the clinical presentation of MG, plus positive tests and a response to Mestinon, it's hard to argue with that.

You made my day. You don't think I'm crazy!!!

I'm going to keep trying as long as it takes to get an answer. This forum has given me the confidence to go on.

I called Dr. Howard's office this morning and they said that they're scheduling new patients 8-12 months out. Yikes. That's not what I wanted to hear! Still, I'm going to go ahead with the referral (I'm going to have to ask the mayo doc for a referral, I don't see any other way). I'm also going to get a referral to a doctor on the west coast that Dr. Howard recommended as a specialist. I hope he's nice. I hope he listens.

Don't worry, I'll keep an eye on the breathing.