Thank you for the support and the input you guys...I really took it in but I have been definitely grieving a bit here.

She was negative in all of her tests and finally today we think we are solid. She did a pre and post mestinon pulmonary function test. Her ONLY low function is in the diaphragm. She recovers about 20% of function when we add mestinon. Our neuro thinks that he can convincingly argue that she indeed has myasthenia if she ends up needing treatment. She has a drop in function when they lie her down and repeat the testing too.

I highly recommend this testing to all the seronegatives out there who are having respiratory issues and cannot seem to get a diagnosis! I mean, she already had a clinical diagnosis by the neuro but now she has an "objective scientific marker" of the disease. It would make a huge difference if she landed in the hospital or needed insurance to pay for, let's say, IVIG.

Our neuro does not believe it's CMS because of her presentation but is keeping that in mind. He does not want to do any treatment to modulate her immune system unless her life becomes unmanageable or she is in danger. Children have a high spontaneous remission rate and we wait to treat the underlying disease. She is currently being managed on mestinon and doing well.