thanks connie, i know. . .i really need the help and support and i am so thankful for all the wisdom and thoughtfulness of everyone : )

Annie, did you see the last note? I know I have a lot of questions. . .sorry. You are just soooo helpful.

And, I wanted to ask you how long are you supposed to be off pred? I can hold the morning dose and it will be 28 hours or so. I just am so confused at this point. It's like I am stuck in this horrible crisis where they will only treat the symptoms until they are certain of the disease since I am sero-negative. But I probably (?) cannot get better without treatment of the actual disease, right?

And when I mentioned plasmapheresis, the doc said I was getting WAY ahead of myself, clearly they won't give me treatment without testing to be positive of the disease first. And it sounds like I need to try to go off the meds somehow so I don't get a dirty test but I may end up in the hospital trying to get to the testing! What do people do in my case?? Is there a solution? How do people get past this?!

debra