It's time for me to find a doctor - easier said than done. I NEED A DOCTOR WITH EXPERIENCE IN ERYTHROMELALGIA IN NORTHERN VIRGINIA - WASHINGTON, D.C. METRO AREA.
Please anyone - give me a message if you know of one or have heard of one.
Thank you
Hi Domina. I am sorry that there has been no response to your question. I have been recently diagnosed with EM by the wonderful doctors in the Scleroderma Center at John Hopkins Bayview Medical Center. I know I said Scleroderma, but they are Rheumatologists in the Center. The head doctor, Dr. Wigley, has been in the field for years, is very knowledgable, and does research to help patients. It just so happened Dr. Wigley and my doctor (also in the center) had been doing research on EM the day before my appointment. She was able to diagnose me on my first visit (after months on not knowing what was going on). Definitely would recommend them. Here's a link if you are interested: http://www.hopkinsscleroderma.org.
Hopefully you wiil find a good dr soon that is knowledgable in EM. My gp didn’t know anything when I first started getting symptoms but he talked to colleagues and one suggested EM as a possible answer. I was then given all relavent testing to rule out everything else and finally got a diagnosis about 15 months after first symptoms. I have educated him in EM, he listens and tries all suggestions about medication and regularly asks if I’ve found out anything on here which might help. Often just finding a dr willing to look into things, be open to suggestions and send you for relavent testing, treatment and specialists is enough. Good luck.
Thanks for your replies. I have decided not to really bother with a doctor - there is no cure and doctors know less than I do. My GP and my Cardiologist are aware of what I have, they have taken my information about EM and actually found more info on the Internet and if I ever feel I want medication (to reduce flare ups) I am sure we can figure out what to try. If John Hopkins wasn't a two hour drive for me (I am single) I would probably give it a try but that is just too far to travel.
Hope you all have a wonderful Christmas Season and stay cool.
Domina
Glad you have the support of gp who will help you trail medication if you find you need it. I am med free at the minute but my MS specialist has recommended a med, I haven’t seen my gp yet and can’t remember the name to research it.