← Return to Anyone out there with Erythromelalgia?

Discussion

Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)
Comment receiving replies
@debinsf8

Hello and Happy New Year to you all. I am new to this group, and am considering making an appointment at the Erythromelalgia clinic in Minnesota, even though I live in San Francisco. It might be worth the travel expense to get the thorough testing and diagnostics for my EM, which I've had for nearly 4 years. Have any of you gone to this clinic, and if you have, what was your experience like? Was it beneficial? Thanks in advance!

Jump to this post

Replies to "Hello and Happy New Year to you all. I am new to this group, and am..."
dipperlip1 | @dipperlip1 | Jan 1 9:03am

I went to Mayo's in Rochester, MN. twice in 2006. After extensive testing I was diagnosed with EM but unfortunately there is not much they can do. Try checking the EM website, especially articles by Dr. Jay Cohen (now deceased) he did a lot of research and published papers as he was a long time sufferer from EM. My EM went into remission but came back last year. I also have Raynaud's, so my hands and feet are either cold (toes blue and purple) or red and hot. I use Aspercream with Lidocaine on my feet if they get really bad during the night. It helps same.
Good luck.

VIEW AND REPLY
gadawg23 | @gadawg23 | Jan 3 4:18pm

I hope you have better luck than I had. I was turned down and have to wait a year to reapply.

VIEW AND REPLY