Hi, I’m new to this group so i’m not sure this is the right place to ask for info about doctors. I really need to find someone in NYC with expertise in EM. Any help would be appreciated. Rhoda
Hi Rhoda, it's not easy finding a doctor who has heard of EM. But NY is a big place. I would start with the University and really big research hospitals and type in erythromelalgia. If it comes up, they may well have a specialist. Just looking for a private practice guy is hit or miss, but again, it's New York. My dermatologist had amazingly heard of it, and that's in Albuquerque. But she wasn't interested in dealing with it. If all else fails, look outside of NYC. You're so close, really, to the big places, Mayo Rochester, Johns Hopkins. I think there's someone in Boston (Brigham and Young? or Mass General?). It will definitely take some internet time.
Good luck. Jane
Hi Rholev.
I see you haven't received the names of any Doctors in your area. Doctors familiar with this condition are hard to come by! If you haven't found one you might want to look for one that doesn't know about it but has an open mind and is willing to learn. You can print out information on EM and it's treatments to bring to your doctor. It might take some trial and error finding one. I would look up general reviews and find someone that is known for taking their time and a good listener with their patients and start there. You can then take the EM information to your appointment and simply ask if he/she is familiar with it. If not just ask if they are willing to read about it and if after doing so if they are willing to assist you in trying some of those recommended treatments. If they say no or your crazy it's no big deal just brush it off and find another one. I myself went through a few before I found the right doctor who is helping me now. You will know if they are right for you if not move on. Not knowing about EM isn't a big deal as long as they are willing to admit they don't know and are willing to learn! Good luck in your search. I hope you find the right doctor sooner than later. Take care,
Alina
Hi, thanks for your reply. I am going to see my GP because of chilblains all winter and hopefully he will have an answer or refer to someone who does. Thanks, Rhoda