Hello, I've been reading on this forum for several weeks while waiting to see a neurologist who specializes in PN. Previously I had 2 abnormal EMG studies, normal MRI, sweat test and 2 office evals. I also have lupus which has been under good control. I was very surprised when he told us I had a hereditary neuropathy (many in family with milder symptoms than mine). We were both happy hearing that because we were afraid I had something like ALS. When I asked for a name of the disease he said as he was walking out of the room 'autosomal sersorineural neuropathy type 1'. I've been living with the horrible pain, balance problems and loss of sensory for 12 years and I know there is no cure or treatment, in the last year my pain has diminished but I've developed atrophy of muscles from my waist down, very noticable and slight atrophy from my shoulders down. I test normal on strength but my physical abilities are far from what they were years ago. We didn't know what questions to ask but the main concern was the atrophy. He said that it's going to happen in this kind of PN and don't worry about he doesn't see me having to use a wheelchair. I asked about exercise and he says he believes in 'use it or lose it'. We didn't think to ask about prognosis. I have skinny legs, very skinny ankles, high arches and hammer toes as did my mom and grandma. I've lost 14 lbs. in 5 months without dieting. I'm 58 yrs. old. I haven't been able to work full time for 11 years due to the fatigue and pain of lupus and PN. I'd love to hear from anyone who has any experience with this disease. If I had to support myself I couldn't, I'm office manager at my husbands office very part time but he is the only employer that would put up with my limitations. Looking forward to hearing from you. Raina