I had my appointment with my gp yesterday and brought this disorder to his attention. He seemed very open to investigating it. He said he would bring it to the dermatologists attention. Is there other specialists who would be beret qualified to make a diagnosis. I have a rhumatolagist and a hemotologist as well. Would one of them be more likely to know what we’re looking at?
Hey, that's great to have a supportive GP. I know lots of people here see a variety of doctors and from what I've seen it can vary geographically as to which particular specialism or doctor has more knowledge of EM. Neurologists also get involved. I guess you have to start somewhere but do ask that the dermatologist shares his findings with the other members of your medical team.
I would ask in advance. Over the summer I saw a dermatologist who argued with me over whether the condition was dermatological. He derisively said, "I've practiced for 42 years and do you know how many cases of erythromelalgia Ive seen? One. You."
After I filed a complaint with my HMO (and they refunded my copay), the administrators found a doctor who was experienced with the condition. They set me up with an anesthesiologist who is a pain specialist. He had treated EM 5 times before. That doctor has helped me a lot.
Dear Natalia, after seeing 4 docs, diagnosed myself easily thru Google and found the EM doctors list. Went to a rheumatologist from the list & after 12 months finally got my formal diagnosis. Research resulted in finding out there are about 7,000 orphan diseases. Knowing this helped me with the frustration I felt for the 4 docs. EM affects only 13 out of every million people. This isn’t exactly the lottery I would have hoped. Hope you can find a specialist from the list. Unsolicited advice warning. When you do find a doctor, call his or her office and question them carefully regarding our disease. The first doctor I called who was on the list had never heard if EM. Good luck.
Just did some research on the doctors list. It is vast & im trusting you can find a doc not too far from you. The list is on the TEA site at “erythromelalgia.org.” Isn’t it great, that tho we’re in pain, and no one we know personally has any idea what we’re going through there’s this group? I have a love/hate relationship with technology-the is one of the loves.
I just had an apnt with my rhumatologist and as soon as he saw my feet he said aaaaa erythromelalgia! Although he would rather the dermatologist formally diagnose it. I was so excited when he said it. And had to explain that my enthusiasm wasn’t for having an incurable, progressively worsening, extremely painful disease. But simply the confirmation by Amy doctor of what I already know Lol. My sister also has it and has for close to 20yrs with no answers. Hopefully my dermatologist will recognize what this really is.