Anyone helped by mayo clinic in mn

Hello everyone, I’ve been working on finding a doctor in my area (San Diego) for years. I saw one doctor in L.A. and that didn’t work out (he was on the list of doctors, but his expertise is Lupus, so he thought I had Lupus but several rheumatologists have ruled that out). Found a doctor near me that has helped me as much as possible and now recommends I go to the Mayo Clinic in Minnesota. That would not be an easy trip for me. My left foot is swollen all the time and in a constant flair. It makes it hard to walk as the swelling is also on the bottom of my foot :frowning:
So, has anyone gone to the Mayo Clinic and found it was helpful? Thoughts on the testing process you go through? Did you feel it was worth the trip? Any comments would be so helpful.
Thanks in advance for helping me out!!

Hi like jewels I am also thinking about going to Mayo, and was thinking of making a similar post! I’m curious about the testing they do … will it give any more insight (as to meds to try/avoid, etc) other than “you have EM”? (It seems that secondary EM is like an umbrella of different underlying causes?)

Do they have equipment that is unavailable anywhere else?


You might find this discussion helpful:

I have not been to Mayo Rochester MN but my PCP sends patients with difficult cases there saying it is The best place for diagnosis and treatment. I would hope calling them and asking them what types of tests they do with an EM patient would provide some information to help feel better about the unknown part of the visit. I just went on their site but it did take a little digging: "Erythromelalgia specialty clinic
Erythromelalgia is a rare condition that causes extreme heat, pain and redness on the bottom of the feet. Sometimes it affects the entire foot and the hands too.

The erythromelalgia specialty group is made up of a multidisciplinary team of experts, including specialists in dermatology, neurology and vascular medicine. These experts collaborate to offer you specialized skin testing, an accurate diagnosis and a treatment plan that meets your needs.

The erythromelalgia physicians at Mayo Clinic are respected worldwide for their expertise in the diagnosis and management of this condition. They have researched and published extensively on the topic in peer-reviewed medical literature. Related video" I couldn’t share the video but if you go to the site it is probably not anything you don’t already know. There is a phone number under the video.
Mayo MN
I don’t know if I did the link correctly but if not, can copy and past it to your browser. I was unable to look further for the tests that are done there but calling might give you the answers.

I have not been to the Mayo Clinic in Minnesota. However, having read this forum for nearly 3 years, there have been numerous accounts from members who have. My general impression from reading those accounts is not favorable. The common complaint has been that those who go there leave with little more than a diagnosis they already knew they had.

Hi Jewels. I haven’t been there yet, but have appointments the end of January this next year. So far, will see a specialist (dermatologist) in EM and have consult, lab work, EMG, sweat test, and then return visit to the doctor over three days. I had wanted to get in to see Dr. Mark Davis, as I’ve seen his name and video online and also on the Mayo site, but there are others, like the one I’m seeing who work with Dr. Davis. Yes, Mayo is outstanding. I live fairly close to Rochester, so can drive back and forth. Will let you know how it goes, but would go ahead with your doctor’s recommendation to make an appointment now, as it usually takes a while to get in. Wishing you the best!

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Hi Jewels,
I live in San Diego also. I would love to share some of the things I have found to be very helpful. Can you email me directly?

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Thank you. I have been to their sight and viewed that video. I appreciate your help!

Thanks Annie, I look forward to hearing how your appointment goes in January.

Hey Jules, you might go to Type “doctors” in the search box. There is a huuuuuuuuuge list of doctors all over the world who are not totally ignorant re EM. Be sure that when you call to make an appointment to ask if the dr is aware of Erythromelalgia and how to treat it. A few will say yes and others may say duuuuuuh. This list is where I found my dr. I got my formal diagnosis and studied on treatments. They really are rather clueless and WE are the experts because of this and another web site. Don’t let yourself become hopeless. It WILL get better.

Please watch Lauren chapmans YouTube which chronicles her visit to Mayo Clinic with Dr Davis (who passed away this year or last year). I think the video speaks for itself. No cure, topical stuff, etc. please check it out before going!

Thanks for your reply. I actually received a list of doctors in all of California from the EM Assoc. I went to a doctor in Beverly Hills that had some knowledge but said that I had Lupus also and attributed some of my symptoms to Lupus. Well, I don’t have symptoms of Lupus (just a blood test that was borderline) and my local Rheum ruled out Lupus years ago. Wasn’t worth the time and effort to see him. Thankfully another lady has told me of two doctors that treat her and they are 10 minutes from my house!! Thank you Ben’s Friends.

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Hello Robyn3, thanks for your reply. I have watched that video, and have tried the topical creams she is using. They don’t help me at all. Just was wondering if anyone had gotten real help from this clinic. I do think Dr. Davis is still working there, perhaps you were thinking of Dr. Cohen who passed away. I actually tried to get in to see him but he wasn’t seeing new patients at that time.

Hey Jewels, Don’t lose heart when confronted by an “expert” who’s totally clueless re EM. It’s a common experience for many of us to have gone from dr to dr desperately searching for SOMEONE to help us. Drs justLOVE to prescribe chemicals. Don’t let a dr be promiscuous in prescribing meds. Keep cool. Patricia aka Satochan.

Hello Jewels. Just completed a few days of testing at Mayo here in Rochester, MN. It was a very thorough exam. I saw Dr. Julio Sartori. I was not flaring at the time and felt, at first, they didn’t believe me because my symptoms didn’t sound as bad as the patient’s they usually see. But, after the tests (blood work, EMG, lower extremity arterial study, and thermoregulatory sweat test), Dr. Sartori and staff were very nice. In hindsight, I think I was probably just really nervous that they might think it was all in my head or something. Diagnosed as erythromelalgia-like presentation and global anhidrosis. Was given scripts for topical treatment and aspirin, but I feel much better having options to try when I do have a flare. In the end, I was very impressed and satisfied with Dr. Sartori and Mayo. If you go there, don’t go alone. If necessary, they add tests throughout your stay, which is really nice to get it all done at once, but it is tiring and can be overwhelming. Hope this helps somewhat. God bless you all who suffer so much from EM. I am blessed to not have a severe case as many of you do.

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P.S. I’m sure many others here have suggested taking pictures of when you are flaring. Definitely helps in case you aren’t flaring when examined. Wishing you all the best!

Dear Annie,
Thanks so much for letting me know how your visit went at the Mayo Clinic. I think no one would question that I have EM as my feet are red at all times and the my left foot is in a continual flair and swollen on the top and bottom of my foot at all times. It’s effects my life so much as I can barely run one errand without being in so much pain I end up standing on one leg or wearing ice gel packs into the store!! I have tried all the topicals (even one the Mayo Clinic did a study on), and multiple meds (over a 5 year period and many doctors). I am seeing a cardiovascular neurologist next month who treats another lady with EM. He lives about 10 minutes from my house, so I hope he can help me or perhaps he’ll recommend me going to the Mayo Clinic. I have dear friends that want to help me with the cost if I do go. Again, thanks for letting me know and your support.

Oh Jewels, I am so sorry that you suffer so much with such pain and discomfort. I hope the cardiovascular neurologist can help you there instead of having to make a huge trip here to MN. Keep in touch. I want to hear how you do and how your appointment goes. I sure do hope you get some relief very soon!

i called mayo yesterday as it seems i have both em and sfn…there is a year wait list which I plan to get on as it seems they are the only em “program” in the country. they advised that i would need to spend a week there. in the meantime, my disease has recently amped up in the past year. the sfn is also in my hands. when the 2 converge, it is a really painful night (days are much better).

Hi Jewels… I am in Orange County and would appreciate if you could share the name of the local doctor that you refer to… I was also looking at Mayo but don’t have the means to travel and stay there…