Thanks for your thoughts Violet and Debra. It really helps alot. To answer some of your questions:

Violet--I am in Phoenix and we have Mayo and Barrows here, which is great. The only trouble is that one of the most unhelpful docs I have met with was at Mayo. He said this was definitely not MS, but when I asked him what he thought it was, he said I am a very complex case and we can't say right now. Rather than being helpful and offering a plan to move forward, he completely dropped the ball. I think he wanted me to drop him as a neurologist. Guess he got his wish. I saw a second neuro specialist who was short, rude, didn't want to hear my questions, and didn't want to look at the ACRH antibody labs...he said they weren't important and we needed to just focus on the lesion (which he didn't do). He spent about five minutes with me and rushed me out the door, telling me to stop worrying. I felt it was really irresponsible of him to refuse to even look at the ACHR and striat antibody results. I am guessing he doesn't know anything about them.

I do have a referral into Barrow's (from the director of Barrows neurology who is a friend of a friend) but so far it has taken them almost three weeks to even schedule an appointment, let alone to be seen. I called to check and they said "oh yes, we have all your information and the referral, you are on our roster to call and set up an appointment. Sigh. What can I do? It's going to take forever no matter which direction I head.

Debra--I'm sorry to hear that you've spent so much time in the hospital. I used to think the hospital was a terrible place to be, but I had no idea what it really could be like until all of this happened.

Interesting about the steroids being contraindicated for MG. I actually read that somewhere yesterday and wondered about that. I had a horrible time on the steroids (partly because they were giving me the max possible dose at 1,000mg/day) It actually landed me in the ICU. When I arrived at the hospital I was extremely weak, but with PT I was able to stand. After the ICU and the iv steroids, I could no longer even stand. I thought the decline was because the episode hadn't hit rock bottom yet, and the fact that I was bed bound for so long...but now I wonder if maybe the steroids made it worse. Who knows. There are so many things that are hard to explain.

Yes I only had five days of actual treatment, though they did taper me off the steroids with an oral prednisone for about two weeks after the iv. They never even considered MG while I was in the hospital, so IVIG wasn't ever discussed. The MG antibodies are a recent lab turned up by the Mayo doc, who after treating me like a psych patient and dismissing my case, had his nurse call me four times in a two day period to tell me he had very important labs he needed to follow up on. Maybe I should have dropped my pride and let him follow up, but I just don't trust him. I do however, need a doc to help me follow up on these results. As mentioned above, the most recent neuro told me he didn't even want to see those MG labs and rudely told me to stop even thinking out them, to put them out of my head because they were nothing. He was so unprofessional.

I would be curious to know how IVIG could help since I am still using a walker and crutches, but I currently don't have a doc to ask. Still searching for a neuro and hoping the Barrow's referral will pan out.

Question for the group though: The MG labs are not something that can just randomly turn up positive, right? They aren't something I should ignore?

Thanks for your thoughts and for any future thoughts. This is really helpful!

Mandy