Thanks stellatum!!
As far as the hip weakness goes.. I knew it felt "funny" in my hips when this all started, I knew i had to waddle like a duck (wide gait for stability and to avoid that "feeling" in my hips... almost a feeling of stiffness/weakness/like they would come out of their sockets).. I would just tell the dr's my hips feel "odd" .. Then one day I tried to run about 20 ft when it was raining to my car, and it was just awkward.. my hips just didn't work like they used to, which used to I never thought about my hips!!! I just wanted to run, I ran! I couldn'tn even run those 20 ft.. couldn't run at all, so i got SOAKED by the time I made it to the car walking .. and walking wierd at that...
I havne't been able to tandem walk (the heel to toe walk the neuros ask you to do) without it feeling "odd' in my hips.. haha i know thats not very discriptive.. but I can't even explain it in words!

Thanks for the info on the immunosuppresants too.. I don't like the idea of suppressing my immune system and possibly increasing the risk of other illnesses while potentially causing side effects.. ugh. .. I can live like this for sure.. but it woudl be nice if the IVIG lasted longer. I do get breathing issues and swallowing difficulty.. when my IVIG wears off..so I may have to try something... I'll talk to my neuro on the 14th and see what they recommend... it's really interesting... and crazy how this all works!