Rach,

Please forgive me if what I'm about to say is a big downer. But, I do feel that not having a diagnosis leaves us extremely vulnerable. I remember in college, as a psych major, reading studies where they gave peope solid facts and facts that were probably true. The probabilities were very high or very low. Regardless, people discounted the facts that weren't presented as solid. You can imagine the implications for us. And I see the same thing playing out in my life time again and again: close friends, my pcp, my sleep doc getting on board when I talk about mg, but then the next time I talk to them it's like it doesn't exist and I'm back to square one
.
I will tell you also that the closest I ever came to dying was after sugery for a kidney stone. My oxygen stats went into the 80's and I could not, could not pull them up. I remember thinking that this has got to be the worst feeling in the world. I felt like I would do anything, cut off my own arm, to be able to breathe. Well, it's such a strong instinct, isn't it? The alarms were going off the the nurse just kept telling me to "relax". It was a nightmare. I begged her for oxygen, which I finally got and then I was scared, so scared because they kept telling me to take it off and go home. At the time I had never heard of myasthenia gravis, I just knew that I was very sick. But I guess that's my point: knowing what I know now I'd have made one heck of a stink. I would have insisted that an emergency doctor be brought in, that my anesthesiologist be paged.
Rach, you're in terrible pain, you're suffering, and ths can't go on. You need help, and you've got to push and push and push until you get it. Yes, you're going to tell people about mg and they're not really going to hear it. But you have to keep at it. Make a list of your symptoms, emphasizing breathing problems, that you're on oxygen and attach direcitons for what to do in an emergency and then give that sheet to every who is involved in your medical care. The emergency directions I use I'll bet you already have. They are from the MGA's Manual for the Health Care Provider, pg. 24, titled "2.13 Special Situation, subsection 2.13.1 Myasthenic or Cholinergic Crisis". I keep a copy of this page in my car, ny best friend has a copy, and I have a copy in the kitchen in a bright yellow folder that my kids know to show emergency people. There is also a section on anesthesia management in the same manual.

You need help, and you've got to get it! As wince inducing and humiliating as it is not to be believed and to have to say it over and over again, you need to keep shoving this information into people's faces when you go to get help for your gi problems. Please, please go get this looked into. And stay strong! You can do this!

Ally