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Erythromelalgia treatment and autoimmune
Hi all,
I (31, F) have been experiencing Erythromelalgia for about 1.5 years. I was diagnosed officially about 6 months ago.
-Asprin didn’t help
-Magnesium does seem to help.
-I have symptoms the worst in my hands, then feet, and also at times get redness on my face and ears as well.
I’ve had various other random symptoms over the last 10 years which lean towards being possibly autoimmune related. Because of this, I recently was referred to a rheumatologist who flat out denied that Erythromelalgia is related to or coincides with autoimmune conditions. I was flabbergasted by this.
So now I’m at square one, and am receiving no treatment for my EM. Any insights or suggestions? I feel stuck and frustrated.
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@haileyrose Welcome to Mayo Clinic Connect! I’m glad you found this site and hope that you get the help you want. I wonder what that rheumatologist thinks EM is related to?! They didn’t sound too helpful. You might try contacting a university medical center or comprehensive medical center in your state for help. The doctors there are a bit more informed than community doctors. When I got sick with an autoimmune disease, the local doctors were completely stumped. Only 1 neurologist recognized the MRI results but didn’t know how to treat the disease. My husband called to university medical center in Denver and we were able to get an appointment. If the medical centers are too far away, they may give you a recommendation of a good doctor in your area.
OR, you can contact these rare disease organizations. They can help you find a doctor.
https://rarediseases.org/living-with-a-rare-disease/
https://rarediseases.info.nih.gov/. They have similar names but they are different!
Do you think it best to call the 2 organizations first before you set off on a road trip?
And how did you find Mayo Connect?