Thanks Limpy - I appreciate all of your help.. I see a doc at UTSW. I will ask how many LEMS patients they have. I know they seem to see a lot of strange stuff and a lot of neuro things that don't "fit into a box".

My veins typically blow.. so they might not be tough enough either They were about to put a picc line in when i was in the hospital, but i told them to keep sticking peripherally first.. and they finally found a good line.

yes, the lack of solid diagnosis for insurance purposes has always worried (and my own mental torment.. until i just accepted it). When we did some of those tests in the past i was on IVIG.. repetitive stim and SFEMG i'm sure would be best done when I'm more symptomatic.. I just don't want to have to get there again.
I had just left a full time job (after struggling for years), to have it easier on my body.. and I left insurance with that and got on my husbands plan, which we thought was better.. but now I"m thinking I'll have to go back to work full time to get the insurance to stay functional..
Where do you go, or where are there LEMS experts that you know of? I have tried not to have to travel for treatment and diagnosis, since I was getting what I needed it wasn't necessary, however if I can't get what I need, then it will become necessary