Originally Posted by AnnieB3

I'll writer later, but I wanted to say that not being able to breathe in or out is a medical emergency, worthy of dialing 911! It doesn't matter if you don't have a diagnosis yet. If you can't swallow, can't breathe in or out, or are generally very weak, it's time to make that call!! An MG crisis can happen very quickly and can be life-threatening (not saying that to scare you, but make you aware of it).

So, please, get some help right away. And see a neuro as soon as you can!!!

Annie

Obviously you snuck in that response before mine went through! That treatment at the hospital was ridiculous!!! Did they check your oxygen saturation (both while sitting and walking/stumbling/falling)? Did they do breathing tests? Did they check an arterial blood gas? Did they even do a thorough neurological exam?!!!

This is NOT standard treatment for someone suspected of MG. You are obviously in a very poor condition and need help right away. I can just hear the neuro office saying to go to the hospital if you get worse and the hospital just said to see a neuro first. Your health is being held hostage and you are being used as a medical ping-pong ball (mixed metaphorically speaking).

Do you have an internist? They can run the Acetylcholine antibody panel (ask if they can send it to Mayo). This is seriously bad doctoring!!! I'm really sorry. Do you have someone who can act as your patient advocate and get someone to help you? You cannot expend energy right now. Sleep as much as you can. Don't get overheated because that makes MG much worse.

If you have MG, you could be on the verge of a full blown MG crisis. Call a neuro's office, tell them that you are so bad that you can't breathe or walk, and that the ER didn't do a damn thing for you. AND that you need to get in right away. Go ahead, be dramatic. This is not even funny. But do not get upset if you can because that will make MG worse, too. Right now, anything you do will drain you.

Do you have eyelids that droop (called ptosis/toe-sis)? You can take a photo of them at varying times (i.e., morning and afternoon/evening) to see if there's a difference. What about double vision? Take your pointer finger, put it at arms length from your face, and bring it slowly towards your face. Do you see one or two fingers? If you see two, does it go away when you close one eye? If it does, you could have MG. MG double vision is called binocular and when you close one eye it goes away.

I hope you'll be okay!!!