Anyone have any suggestions for doctors to see in Michigan? I believe I have EM but have not been diagnosed and don’t have any idea what would be causing it!
Where in Michigan are you?
Same question here from Michigan. I’m in the Detroit area
Hey All,
I would begin by searching The Erythromelalgia Association’s physician directory, this way you’ll see a specialist who has dealt with this rare condition before.
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I live in the Detroit area now, but was originally diagnosed in Florida by my PCP and a rheumatologist. I think it’s really important to bring pictures and documentation of your flares. I had a bunch of photos on my phone of my feet/ears/hands because it’s really unlikely to flare in the small amount of time you get to see your doctor. (Also so that in addition to you being like “this is painful and weird!”, they can see it is indeed painful and weird.)
For local doctors, there is a dermatologist at the University of Michigan that has seen EM before (Dr. Yolanda Helfrich - she is also listed in the resource kost1982 posted). I feel like knowing about it’s existence is half the battle to getting a diagnosis.
I hope your diagnosis journey goes well!
Thanks for the info! Did you ever get a diagnosis?
You’re welcome. I hope some of it can be useful to you!
Yes, I was diagnosed about 2 years ago w/ primary EM. When I moved to Michigan, I found a PCP/some specialists and they all double-checked with more bloodwork/rheum/neuro/cardio tests and agreed with my diagnosis.
Well, I am currently in the hospital, was having issues so they did an MRI. I have Type 2 hypersensitivity, so asking for prayers. See neurologist tomorrow so not sure what means!