hi guys..we are still trying to find a doctor in south florida?i have a question for everyone..what type of doctor should my wife see first.A rheumatologist or a Neurologist or a Hemalolgist..any ides or comments would be a great help..
I saw a neurologist first, she diagnosed me. It was good to see her as they could test to see if I had anything else like nerve damage etc… Which I did so they found that link. I’ve seen her for 6 years and I benefited from that.
no doctor really has an answer for erythromelalgia, even the mayo clinic. The Mayo will tell you what you have but has no answer for a cure as of this time. I went back in 2005 to the mayo and they did 3 days of tests, only to come up with what I have, peripherial neuropathy with erythromelalgia in both feet and hands. Just try all sorts of meds and creams and go with the the that best fits your problem. God Bless and pray like I do every day
pkman said:
no doctor really has an answer for erythromelalgia, even the mayo clinic. The Mayo will tell you what you have but has no answer for a cure as of this time. I went back in 2005 to the mayo and they did 3 days of tests, only to come up with what I have, peripherial neuropathy with erythromelalgia in both feet and hands. Just try all sorts of meds and creams and go with the the that best fits your problem. God Bless and pray like I do every day
Hi there,
I hope your wife finds comfort soon. I have lived with this since I was 7 I will be 41 on Saturday. I see a Neurologist as well who specializes in Neuromuscular diseases she is the one who diagnosed me. She is a whiz! Perhaps ask to see a Neuromuscular Dept. neurologist. I also take Topomax at night which has helped so much along with no blankets on my legs, gotta do what I gotta do...lol! Good luck!
Is mayo clinic not more of experimenting and gathering information on em rather than treating you though?
pkman said:
no doctor really has an answer for erythromelalgia, even the mayo clinic. The Mayo will tell you what you have but has no answer for a cure as of this time. I went back in 2005 to the mayo and they did 3 days of tests, only to come up with what I have, peripherial neuropathy with erythromelalgia in both feet and hands. Just try all sorts of meds and creams and go with the the that best fits your problem. God Bless and pray like I do every day
i saw all of those specialists, and they all recommended i see a dermatologist. Sure enough, after my appt the dermatologist spent a week researching and diagnosed my erythromyelalgia. he was the only one to take me seriously too.
Lauren said:
Is mayo clinic not more of experimenting and gathering information on em rather than treating you though?
pkman said:no doctor really has an answer for erythromelalgia, even the mayo clinic. The Mayo will tell you what you have but has no answer for a cure as of this time. I went back in 2005 to the mayo and they did 3 days of tests, only to come up with what I have, peripherial neuropathy with erythromelalgia in both feet and hands. Just try all sorts of meds and creams and go with the the that best fits your problem. God Bless and pray like I do every day
NO, the Mayo Clinic in Rochester, MN treats patients with ALL KINDS of rare clinical syndroms, if you have the chance I would recommend a visit to the Mayo for any type of problem, the doctors are very professional. There is also a mayo clinic in FL. and AR.
pkman said:
Lauren said:Is mayo clinic not more of experimenting and gathering information on em rather than treating you though?
pkman said:no doctor really has an answer for erythromelalgia, even the mayo clinic. The Mayo will tell you what you have but has no answer for a cure as of this time. I went back in 2005 to the mayo and they did 3 days of tests, only to come up with what I have, peripherial neuropathy with erythromelalgia in both feet and hands. Just try all sorts of meds and creams and go with the the that best fits your problem. God Bless and pray like I do every day
I would see a rheumatoligist first and hope they know something about EM. In other correspondence I have read that is where people seem to have received the most help.
Judy
Any doctor she sees could be the one that helps, regardless of the specialty. Could be neuro, derm, rheum, even a really great podiatrist. I saw neuro first and rheum right after (had simultaneous referrals) and that worked well. The neuro figured out the mechanics of what was happening, the rheum figured out some other things the neuro missed, then the primary care doc put it all together and diagnosed EM (after I provided photos of my feet and printouts from The Erythromelalgia Association).
Now I'm treated by a neuro and primary care doc for the em. And geneticist and allergist for a condition I have that exacerbates the EM and may have triggered the onset years ago.
Havet been diagnosed with EM for going on 3 years, diagnosed by a friend who’s an intensive care doc. Have since then been followed by a neurologist, more specifically neuromuscular…
Good luck, as you have probably read, no one doctor or cure "fits all"
Best of luck
Okay…
I live I’m the UK lol but before people had said they had got an appointment at mayo and it was really for them to just be a test subject! Same with Yale too I think? Don’t know much about both personally 
pkman said:
NO, the Mayo Clinic in Rochester, MN treats patients with ALL KINDS of rare clinical syndroms, if you have the chance I would recommend a visit to the Mayo for any type of problem, the doctors are very professional. There is also a mayo clinic in FL. and AR.
pkman said:
Lauren said:Is mayo clinic not more of experimenting and gathering information on em rather than treating you though?
pkman said:no doctor really has an answer for erythromelalgia, even the mayo clinic. The Mayo will tell you what you have but has no answer for a cure as of this time. I went back in 2005 to the mayo and they did 3 days of tests, only to come up with what I have, peripherial neuropathy with erythromelalgia in both feet and hands. Just try all sorts of meds and creams and go with the the that best fits your problem. God Bless and pray like I do every day
Yale is just doing research ininherited EM, so participation is for the purpose of helping people with EM in general (by helping them develop meds for us all) but they aren't even allowed to tell subjects if their tests showed they have the inherited type. Mayo is a research institution too, but also treat clinically, but I've heard EMers who have been there say that it's mostly useful if you can't find anyone capable to determining whether your problem really is EM. They are good at diagnosing it, but not great at treating EM, is what I've heard.