Hi Everyone,
I am a bit of an old timer when it comes to MG. I was dxed at 23 and am now 34. I had a thymectomy at 29. I live in a small town in Oregon. I went to the ER last night and was seen by an older dr who had NEVER treated anyone with MG. Let's just say I have some kind of angel that watches over me cuz his first move was a breathing treatment! Nebulizers make me very weak and shaky. My NIF was no more than 15 after that. And my O2 kept dropping to below 85. He then puts me on O2 and asks for an ABG. Which he said was not too bad. Anyway long story short I did my shut everything else down and breathe super slow, my heart rate usually goes down pretty low too. And then after a bit I feel better. My stats go up and he decides he miraculously cures me. I get sent home with 20 mg of pred every day for 4 days. I am not currently needing treatment for the MG, it has been under control until recently.

In the past I have had IVIG and plasmaphersis, mestinon, preds, and immunosuppressants. I have been quite lucky to avoid the respirator, as I am a bit terrified of that happening. I have been given 5 minutes to improve on more than one occasion. I was dxed with RA about a year ago and have just recently gone off the injections, Enbrel and Humira, for that because I am constantly sick. I think going off all immunos might be the root of this recent change...

My main question is that I always get treated very badly and they never do the right thing. Would it help to have a small binder with pertinent info and what to do if i am in crisis? I have a LOT of allergies and quite a few other auto immune diseases. Do you think the ER drs will look at it? And respect it? Or be even more meanies because of it?

Thanks for any advice!!