Hi, Rach. It sounds like neurologist in the UK are even worse than they are here. Did they really think you O2 stats dropped due to stress?!

Who did you see over there? Here is Dr. Angela Vincent's information and email. Why don't you email her and ask if she can run your Acetylcholine antibodies (binding, blocking and modulating) and the MuSk antibody test? Then maybe she can refer you to a neurologist who isn't such a jerk.

http://www.imm.ox.ac.uk/pages/resear...es/vincent.htm

Oxygen stats don't just drop like that for no reason. Did the "breathing specialist" do what is called MIP (maxiumum inspiratory pressure) and MEP (maximum expiratory pressure)? Those specifically measure neuromuscular weakness that causes breathing problems. That's what they SHOULD be doing.

Everything you describe sounds like a neuromuscular disease. Maybe it's not MG but it doesn't sound like they have ruled it out - or anything else really. Did they do a creatinine phosphokinase test to rule out polymyosits?

Do you have neuro-ophthalmologists over there? They can do certain tests to see if your ptosis (droopy eyelids) are fatigable. Fatigable weakness is the hallmark of MG. MG gets worse upon exertion/repetitive activity and better with rest.

Dr. Vincent understands that not all people with MG have antibodies. And if you are on Mestinon or steroids when they do those tests, they can turn up negative. You should NOT withdraw from any meds without the doctor saying it's okay though. You could go into a breathing crisis just from doing that.

I hope you can get some help. This is crazy the way doctors treat patients who "might" have MG. This kind of sexism where they say women are depressed instead of having a real disease makes me want to scream. Why don't they just give all of us women antidepressants from birth?!!!

Take it easy out there in the summer heat. If you have MG, it will make it much worse.

Annie