Seishin, You should be resting. Adrenaline really kicks in when you've been mistreated like that. They probably thought you were fine since you could speak. Yet another MG misconception. Do we have to "fake" or exaggerate our symptoms in order to get adequate health care? No, I don't recommend that!

Maybe we should simply stare at the ER doctors, open our mouths as if to speak and then say nothing. I wonder how they'd respond. They don't like it when we stand up for ourselves.

I think a trip to your primary doctor is in order. You should have them assess both the GFR and the high hemoglobin. Ask them to send a letter off to the ER doc you saw too, plus any results. You need full PFT's to truly assess what's going on and how bad you are.

I have had one too many ER trips, many not MG-related, that were not good that it's really hard for me to go in. But who else is there to help us in an emergency?!!

I'm so sorry that this is the typical way MG patients are treated. It is ignorant, NOT objective and unethical. You did not deserve it. Get help from other doctors like your neuro, primary doc and pulmonologist.

It also might help if we got "treatment letters" or protocols written up by our neurologists to give to the ER when we arrive! I have asked doctors to do that in the past any time I've had a diagnosis. It does help.

I hope you're feeling better soon. I am beyond sorry for what you had to go through.


Annie