It was somewhat difficult to answer your questions due to so very little information. I have a very rare disease and not only that it’s a very rare subtype of this rare disease. I believe if you contact Health Direct, 13 HEALTH or your GP they will be able to help direct toward an appropriate support group. Last year I developed an incredibly rare and extremely painful disease which I am dying from. I have been left a paraplegic and am in a wheelchair. I need nurses around the clock as I cannot use my hands nor arms due to the neuropathy. My pain goes from pins and needles, to feeling like I have an electrical storm in my body, to musculoskeletal pains from spasming, wasting away, burning pains. A neurologist told me this is considered one of the most painful ways to die. Mine is called ASAM GBS/CIDP. Please send more clarification so as I may help.