Rae Lyn,

So sorry to hear you are suffering from this horrible condition. I have never heard of it. I googled it and see it is quite a rare disorder.

The only advise I could give is to try and find a doctor who specializes in this condition. Which I'm sure is not going to be easy. I live on the east coast an hour from NYC and have a worked with doctors at the Hospital for Special Surgery which is a orthopedic specialty facility. They also deal with many other conditions. HSS has a new departement for nerve trauma. It looks like they are concentrating on the Brachiel Plexus(spelling)area but do talk about other nerve conditions. They may be able to give you some information.


Truly wish you the best.