if I can answer some questions...

First - Billye - I'm not giving up! And yes, my emergency info with the cats vet, "Foster Mom" etc have been on the fridge door for years! I carry my meds, and doc names with me all the time in planner and wallet.... (oh, I have PN on one side of fam that hit early but never got super severe - but my genetic background is also very common for genetic type mutations)

I just heard from the nutrionalist at the hospital - got to meet with her in next couple weeks since I'm not gaining weight - so thats next on the agenda..... Mrs D - thanks for that link - I will contact her....

Joe - I think I kind knew that I wasnt gonna get relief from this - especially the decline I've seen the past year or so... its a good thing to know what one is dealing with...

Dahlek - doing the PT - its actually helping my back some... just sleep for the next two days! so I the nutrition issue is part of this.....

SS - you know Bax needs me!!!!!! I promise to be here for him - I have to turn on the puter so he can send you e's!

Glenn - they had to do clinical diagnosis by ruling rest out and closely studying sural nerve etc.... and progression of disease - actaully I have two top neruos that are agreeing on this now... there is no test yet though - they are working on one... on amyloid - they still wont rule out cause it can present as other conditions first and go on for years - but at this point the doc left up to me to do another biopsy right now - I said no - we'll see what happens.... genetic just makes sense.....

Anyway, time will tell.....