Hi Kitt, thanks for your help now and a month ago. Dr Dyck told us I had hereditary PN but we didn't know what questions to ask and were only concerned about the atrophy, he said that's to be expected in PN and that it can't be reversed and he didn't see me in a wheelchair. He offered me more tests to confirm it but said I didn't need to go through them again at this time. He did not mention CMT. I was offered cymbalta and lyrica but declined because I'm on a similar drug, effexor and I was worried about lack of energy and weight gain if I took lyrica. He said to come back if I have muscle weakness. I'm on strong immune supressants for my lupus so it seems unlikely
the PN is inflamatory. I'm just really curious about my exact diagnosis. I've already figured out the possible outcomes. I'm doing some very light PT to strengthen arm, shoulder and leg muscles. I would like more pain control and may have to try the lyrica. I have a good life but am limited in what I can do because I get exhausted very easily.
thanks Kitt. Raina