Thanks Dawn! It's good to know that there are others out there in the same boat. I haven't talked to this neurologist yet since the last MRI, but my first told me there was no way it could be anything neurological. He said it's impossible with all normal tests, and to see a psychologist. I've been thinking lately maybe I am going crazy

I am lucky in a way, I'm in Canada, so don't have to worry about insurance, coverage, etc. I can ask to be reffered to pretty much anyone I want. The down side is it takes soo long to get appt.s and tests. Each new test is booked months in advance, so it's very slow going.
I'll just keep at it, and maybe will ask to see another neuro. I've been to rheumatology too, but that's about it. I think I'm going to start to really bug my gp to get things moving, I'm tired of this.