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Anyone out there with Erythromelalgia?
Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)Comment receiving replies
Oh wow, I didn't realize that there was an application process. Did they say why you were not accepted, as in, your symptoms were not what they were looking for in their study, or they already had too many people? I was thinking I could just contact them and see if I could get an appointment this summer, when I could come out to MN. I guess I will just give them a call and find out what the process is. Assuming my EM is secondary to something, I am most interested in the additional diagnostic tests to determine what that "something" is. My doctor had me try 2 weeks of high dose aspirin, which had no effect, leading her to rule out primary EM.
Replies to "Oh wow, I didn't realize that there was an application process. Did they say why you..."
I am new here, and it appears the common thread is the lack of answers!
You said aspirin had no effect on your EM, and therefore primary was ruled out. Does that mean if aspirin had worked, that it is probably primary?
I developed symptoms three months ago. My bloodwork is normal, and I am more confused than ever.
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I called and talked with someone who took all of my information and submitted it. I was told that I had a really good chance of getting accepted. Someone there reviewed my information and I received a letter informing me that I was not accepted and that I could try again in a year. This is my third year experiencing EM and would love for someone to find a cure . Good luck to you and please keep us informed of your progress .