Started with chronic hives sept. '12; went to derm, then allergist; treated with OTC to avoid steroids; meds were ok but the second I stopped oTC, hives were back; fast forward few months and went to internist; all labs were perfect (w/exception low vit D, which is common); she did find dermoid tumor on ovary and I already knew about gallstones. Took about 2 months to schedule surgery for dermoid and gallbladder b/c of kids and husband’s work schedule. During this time, hives tapered off and were replaced with intense, burning redness - on hands and feet (once on right ear); I can feel a flare before seeing red, then it spreads to most area nearby, ie entire palm. The veins in flare area bulge and burn almost as the redness is moving. The episodes last anywhere from 5-30 minutes, some worse than others. Had surgeries 2weeks ago and still experiencing flares; I had hoped something in dermoid was causing issue. Returned to see internist today, mentioned possibility of early EM and she didn’t even know what it is; she referred me to another derm. who can’t see me until Sept. my dr, said, "well, the good news is you are healthy as a horse, referring to lab work. Felt like crying. I’m attaching a couple of pics and would appreciate any feedback. Thank you, CE
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where do you live? you may need to go to a doctor who knows about EM. I'm kind of in the same boat...not sure I have EM or not, but my dermatologist is a "teaching doctor" through a hospital and he made the diagnosis. He prescribed medications (amitri???) and I took it but determined that the side effects were worse then the symptoms. What I've decided is that I need to figure out the best coping method for me. This site is good because there have been many posts of ways others have received relief. It seems like EM symptoms come with different severities and you need to work out a plan of coping that best fits you. Hoping more research can be done and they find out WHY?HOW?WHAT? about EM.
I live in Dallas; on the positive side, a friend was very high up at ther Am Derm Assn and his name is opening a few doors for me. One of the top guys at UT-Soutwestern has agreed to see me so I’m calling him today. It’s just frustrating. I hit the wall yesterday with internist b/c she said the derm she was referring me to would most definitely want to biopsy when flaring but (a) I have no idea when they’re really coming, ok, maybe 5 minutes beforehand, but… and (b) I can’t even see this person until Sept so biopsy isn’t happening. I felt so desperate yesterday I actually considered researching how to do the biopsy myself and submit to the lab. Yes, I was willing to cut a chunk of skin w/o numbing. Needless to say, I’ve regained my composure today. Ironically, I had flare with bulging vein on hand about 1.5 hours after I left internist office. Thanks for the message. It means a lot.
My flares comes when I'm warm...or do a lot of walking. when I went to the initial visit with the doctor I went to the appointment early and vigorously walked around the building until it was time. My feet were as red as a tomato. It got their attention because it was the dead of winter and the office was freezing cold. The fact that you have a top dermatologist willing to see you is a good start. I would keep track of when you have flares, etc. and bring that all with you to the appointment. Let us know how it went.
That’s a great idea about walking before appt. I read somewhere that the head of derm at Boston U diagnosed the guy by simply having him shake/pump his arms/hands downward towards to the floor (they turned red) then he had him raise them like he was asking question.
Biopsies aren't helpful for diagnosing EM. There is no consistent histopathology for EM, according to a number of studies I've read. An EM diagnosis can be made clinically, based on symptoms (red hands, red feet, skin hot to touch, etc.) and exclusion of other potential diseases.
Cindy's suggestion of journaling your flares is a good idea. Part of how we finally got my diagnosis was based on my documentation of what triggered flares (exercise, heat, stress).
Good luck with your appointment, and keep us posted on how things go.
I had a biopsy...but actually that was to rule out other things the doctor thought it possibly could be. The biopsy came back negative...so the EM diagnosis was made.
That's a good point, Cindy, that a biopsy may be done to rule out other things. I just meant that EM itself can't be diagnosed by biopsy.
Sorry for any confusion!