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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)
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@rman1

I have been recently diagnosed with erythromelalgia in both hands and feet. I am 53yr old male. I also have elevated CK & ALT levels, blurred vision, left eye #4 nerve palsy, lower limb peripheral neuropathy, fatigue, and shortness of breath. I am trying to find someone who can point me to the contact info for the erythromelalgia clinic at Mayo Rochester. I have been getting worse over the past 2 years and now find it hard to do anything without pain.

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Replies to "I have been recently diagnosed with erythromelalgia in both hands and feet. I am 53yr old..."
Becky, Volunteer Mentor | @becsbuddy | Feb 18 9:02pm

@rman1 You sound like you have quite a bit going on. It’s not easy getting into Mayo Clinic so you may want to work with your doctor and get them to help with the referral. I included the link to a discussion group on traveling to Mayo.
https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
Also, at the bottom of this page, in the blue area, is a button for ‘request an appointment.’ This will take you to the main appointments desk where you can ask questions
You can also go to the top of this page to the white space with the magnifying glass and type in ‘referral to Mayo Clinic’, then tap search. Individual discussions will come up and you can scroll through them.
I hope this helps a little.

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