Hi, Vicky. Can you do a new post? I'm afraid this will get lost in this one!

What neuro did you see? Your daughter does not need to see a pediatric neuro, unless those are the rules in the UK (you are in the UK, right?).

The fact that your daughter's test was positive WHILE she is on an inhaled steroid should have been taken more seriously. Steroids, even an inhaled one, make the signs of MG go away.

To me, she sounds as though she desperately needs more meds. She could go into a Myasthenic Crisis. Please get her to a neurologist as soon as you can! Not the same one, of course!

I'm sorry that you both have MG. The antibody levels do NOT determine severity in MG. And one can't tell by looking at someone how bad they are! Stupid doctor!

MG fluctuates greatly throughout the day. Did this doctor even do a clinical exam?

I hope your daughter can find a neuro to help her. Anyone here from the UK know of a good one in her area?


Annie