My appt. went so well today. It seems I never had peripheral neuropathy. I still may have EM but he is thinking more along the lines of Reflex Sympathetic Dystrophy (RSD, Complex Regional Pain Syndrome, CRPS). He is running a bone test to confirm it. He says that many people are miss-diagnosed with EM or PN. Don't get me wrong, many years ago some called RSD, EM, they just seem to have split off into similar but different conditions. It still has no cure but, it is treatable.
Many of you have the same symptoms I have and are getting no relief. It is definitely worth it to check into it. He told me that it is a very well known disease and stated that "hypothetically" if he took pictures of my legs and feet along with a basic history on me to a group of med students and asked them to diagnose me, everyone would say I had RSD. This after seeing more than 8 doctors in the last 18 months that couldn't "figure it out"? Quite disturbing that many doctors have difficulty diagnosing something so well known. Anyway, my doctor is having a test done on me called a triple-phase bone scan. It identifies changes in the bone and in blood circulation. He says it is key to giving an accurate and official diagnoses.
Please, please, please look this up. See if you fit the profile. Some of the treatments are the same as EM but there are some different ones as well. Here is a website I found with quite a bit of info for anyone who is interested. http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm
I feel that if this information helps even just one person, I have done some good. Hang in there friends and don't ever give up, no matter how bad it gets, there is always someone who has felt your pain....YOU ARE NEVER ALONE IN THIS!! Praying for you and Love you all...