Limpy, I am so sorry you are having such issues too! But that makes me think twice about trying plasmapharesis!

I am sitting tight for a thymectomy and not letting them try anything else. There is on one to take care of you if something goes wrong. The office tells me, if you feel worse, go the ER. I am a single parent and I cannot go the ER. Who will take care of my teenage daughter! Is the ER the only place you can get medical treatment? I thought that was what the doctors who know your history and treatment were suppose to do.

If I knew a place that I could get the right treatment, I would move there. I am going to have to be dealing with this for the rest of my life and I cannot tolerate this kind of treatment. I will not survive it. And I have no advocate to go with me to help. I am on my own.

This disease is very isolating. My own GP wont even help me.
kathie