Dr Jérôme Connault in France : CHU Nantes.
I was diagnosed over 15 years ago by a Kaiser Doctor in San Francisco. He was an Internist. I will check next time I see my present Kaiser Doctor. Brian Loeffler
I was diagnosed April 2015 by Dr Sarah E. Berini at the Mayo Clinic in Rochester MN. She was a wonderful doctor to deal with and very knowledgeable.
Sarah E. Berini, MD
Consultant, Department of Neurology
200 First St SW
Rochester, MN 55905
Appts: 507-■■■■■■■■
Hi Mads, hope you’re having a painless day. Somewhere here on the web is an EM specialist list from which I found my doctor. I wish I could tell you the exact site but I’m sure it would come up with the list. The doctor I chose was Richard Stern in Dallas, TX. He’s a rheumatologist and has had experience in treating EM.
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I have the best neurologist ever! Her name is Dr Marisa Chang in Los Angeles. She only recognized my EM because she came across it in her residency at UCLA. She is performing all of the tests they do at mayo and she is so compassionate and willing to always go above and beyond. I’m sorry I don’t have her address or phone but Google her and she will pop up. You will love her!!!
Hi. I live in Dorset in the uk… I went originally to my doctor to be diagnosed and he had no idea so sent me to a rheumatologist who also had no idea but looked at photos I had taken and am happy to say took me serious… He then got together a team of eight leading rheumatologist from the area and they held a meeting with me present and together luckily they found the diagnosis as two specialist present had heard of the condition although none had treated it. I was advised which drugs I was presently on would make worse… Nitrofluratin, topiromate, also domperidone, and told to see my gp for him to investigate which treatments would be best as I have other illnesses. I then researched myself and discovered a doctor in London called professor Christopher Denton who specialises in EM so I spoke to my doctor ( luckily a very good doctor) and he has sent a referral letter for me to see him at the Royal free at Hempstead so fingers crossed ( on a good day ) I feel very alone with this at the moment and in desperate need of some relief . Walking and being outdoors is my life and this is a disaster for that as photography is my world… Also I love auctions buying and selling this won’t stop me has slowed me down and has meant a few drugged up moments, but I will go on with a smile I would just like a little help and support along the way and not to feel quite so alone with this.
Hi Julie,
I am looking to find a doctor to diagnose me with EM. I live close to Houston so I am happy to see you found a good doctor there! However I see he is a pain management doctor and I am more concerned about the redness and flushing of the condition, did he help with this or only the pain? Thank you!
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Hi Fellow Burners. I got my docs name on the Erythromelalgia association web site. It is vast and I highly recommend it. I had seen 5 docs. Diagnosed myself through Googling my symptoms and there it was. Went to the TEA web site and found a doctor in my area, went to him and got my formal diagnosis. This is a very similar history to many “burners”. Good luck. 
I was diagnosed a few years ago but had symptoms for a couple years prior. I ended up going to Cleveland Clinic to a cardiac/vascular dr who diagnosed me immediately and put me on current meds, sent me to a primary physician. For last 3 years that Dr has done Nothing. As of a bit over a month ago I told her she wasn’t helping me, and let her go. I just started going to new primary Dr, and he’s referring me to a neurologist, and dermatologist. We shall see, because I’m getting worse due to it now being in my hands. I’m miserable. If I find anyone worthy of listing, I will SHOUT it out to share.
My dr is a rheumatologist
His name is Dr. Tim Lonesky
Affiliated with Lake Cumberland Regional Hosp.
LAKE CUMBERLAND RHEUMATOLOGY
28 OXFORD WAY. SUITE A
SOMERSET, KY 42503
1 606 802 2400
Dr Gerard Vonnors
Greenslopes Private Hospital
Ramsay Specialist Centre
Suite 212, Level 2
Newdegate Street
Greenslopes QLD Australia 4120
61 07 3255 7200
Hi just interested what meds you are on ?Hi you are sertainly not alone some people do have luck finding meds that help although no cure at the moment .
This doc sounds good at least he knows about it you need to have patients keep your head up and U.S. Cold packs on feet or hands this will take the pain away for some time . Sit with your feet up ,use a fan . Good luck _
@Flame I have 60mg Cymbalta each morning and 150mg if Lyrica at night. Norgesic for teeth pain.
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Hi
Thanks for the reply I am taking lyrica also 375 mg a day
And venlafaxine only 37.5 low dose I have tried coming off velaxafiine terrible sickness had to go back on cymbalta is supposed to be like that as well … This drug is scary .
I am probably drug sensitive .
@Flame I used to take 150mg Lyrica in the morning as well. Stopped about 3 months ago…Used washers and air conditioner to cope. Now I’m going to go off morning Cymbalta. I stopped eating vascular foods especially tuna and fatty fish. This has helped heaps.
Oh my god! You are the first one to mention teeth pain! I thought I was nuts! I have tried mouth guards, not the dentist made ones, and then I did have a dentist make me a "cheap " mouth guard. What is it? Are we grinding or clamping? It’s constant and I am wondering if it has contributed to my occipital neuralgia ??? Any one else out there?
@Robyn3 yes me too. I actually thought I must have been making it up. I do have TMD on top of the EM.
We have worked out that when I have a bad EM flare the gums inflame and when I think it’s my jaw that’s hurting it’s actually the gums; the trip of my 
turns red -> feels like a hot poker is being pressed on the top of my then it just burns like normal. If really bad I put a spit of my compound cream on gums and tip of tongue.
Also, don’t eat any or much vascular foods or tuna or fatty fish. Doing so may end in many and varied bad burning flares.
Also, with your index finger on the inside of your mouth and thumb matching same spot on the outside area… Firmly massage the masseter muscle… It does other relief.
New York, NY/Winston Salem, NC. USA
Dr. Joseph L Jorizzo is a Professor of Clinical Dermatology available in North Carolina Monday-Wednesday in Winston Salem, NC. (Wake Forest School of Medicine) and in New York Thursday-Saturday (Weill Cornell/NYP Medical Center)
CONTACT INFORMATION:
Joseph L. Jorizzo, M.D.
Professor of Clinical Dermatology
Department of Dermatology
Weill Cornell Medicine
1305 York Ave, 9th Floor
New York, New York 10021
Email: ■■■■■■■■■■■■■■■■■■■■■■■
Dr Kinkaid, 355 W 16th St, Indianapolis Indiana 46202 317 ■■■■■■■■
He teaches other doctors about it. He’s a Neurologist.