I am curious about your tooth pain. I had a root canal that never healed properly. If I put my tongue against the tooth it still hurst 8 mnonths after the procedure. Can this be part of the EM issue?
Dr. John Kincaid, Neurologist
Indiana University Health Neuroscience Center
Goodman Hall
355 W. 16th Street, Suite 4700
Indianapolis, IN 46202-2267
317-â â â â â â â â
Recommended by my fellow EMâers. Heâs awesome, so worth the drive. I actually diagnosed myself last year. Dr. Kincaid confirmed it. Couldnât get my PCP or 2 Rheumyâs to touch it. Said it had nothing to do with them.
Iâm needing a doctor recommendation in the boise id area I was semi diagnosed in March 2017 .my primary dr is trying to treat erythromalgia but Iâm in alot of pain and flares are constant currently working only 3 days Iâm a hairstylist so standing my feet are red almost purple help
Her address is:
Neurological Associates of West Los Angeles
2811 Wilshire Blvd., Suite 690
Santa Monica, CA 90403
310/â â â â â â â â x602
310/â â â â â â â â fax
Kristine is Dr Changâs assistant
Yes, I agree with you. Also I have TMD, so bit hard to know. Cheers, Terri
OU Physicians Clinic
Oklahoma City Oklahoma
Neurology and Vascular Specialists
Hi just spotted your post. I also dxed myself.
I have MS for over 25 years and also Raynaudâs since I was 19. Iâm 64 now. My doctor (neurologist) told me to go home and do the research myself. Although he said it was most likely the autonomic nervous system causing my problems with EM. So the question I have is can MS be causing the Raynaudâs as well Itâs a vascular shunting problem with both illnesses. Or another question is could it be Raynaudâs and EM are the same illness only is it a progressive illness.
Itâs always been suspected that I have Lupus as well as MS. The doctor told me it isnât unusual to have both conditions. Iâm baffled!
Anyway the doctor increased the gabapentin that I take for the nerve pain of MS. Lo and behold the EM has been calm. Itâs still there but no horrific attacks. I understand each and every post here. My advice is try different treatments until you find the something that helps. Everyone is different.
Ann_A, it is common to develop more and more autoimmune diseases once you have one of them. Personally I think that there should not be such a distinction between them⌠the diagnosis should actually be that oneâs immune system is clinically insane. Period. 
Sorry to hear about the MS dx. Have you ever seen a Lyme-Literate doctor to ask if you could possibly have Lyme? Lyme definitely played a role in my own perfect storm of AI diseases, fibromyalgia, Raynaudâs and EM.
My own neurologist prescribes a combo of Cymbalta and Lyrica for the fibro and the mini-seizures that she believes Iâm having. I think that Lyrica is chemically related to gabapentin? Anyway, those meds (especially the Lyrica), really help with my EM! I know because I have occasionally forgotten to take my Lyrica, and have had monster flare-ups of EM the following day.
Youâre right that everyone is different, though. People shouldnât be afraid to get second and third opinions if a doctor doesnât know how to help you! And tell the doctor that both gabapentin and Lyrica are known to help the pain of EM. Dermatologists are generally very familiar with EM, Lyme doctors too.
I mention Lyme doctors⌠they are DIFFERENT from Infectious Disease doctors. If you would like to be told you DONâT have Lyme (even if you do), go see an ID doc. If you would like to see someone who knows how to actually figure out whether or not you have Lyme, see a LLMD (Lyme-Literate MD). Lyme is epidemic in this country; it has been found in ticks in all 50 states. You donât have to go camping or hiking to get a tick bite. You can get them in your own backyard. The most dangerous kind of tick is the one that is too small to see (baby ticks or nymphs).
You CAN get EM and autoimmune diseases without having Lyme, of course. But one very common way AI disease is triggered is by an infection, such as Lyme or mononucleosis (Epstein-Barr virus).
In any case, good luck to you, Ann.
JoAnn
Hi Christie,
My GP is very holistic, but she doesnât take insurance. She is very good though, knows essential oils and herbs, all kinds of alternative therapies. She can likely refer you to the right person if she feels she is not right for you. Her name is Dr. Ann Huycke.
Also, my neurologist prescribes Cymbalta and Lyrica for me for fibromyalgia. The Lyrica works very well on the EM pain. Her name is Dr. Martha Cline, she works for St Lukeâs Neurology and she DOES take insurance.
Good luck!
JoAnn
Thank you joann my neurologist diagnosed me finally after doing more blood work and a skin biopsy to rule out small fiber neuropathy she said i have primary EM im taking 2700 mg of gabaphentin and cymbalta also hydrocodone im going to see a new MD pain management dr on the 9th of jan trying to manage pain so i can continue working but now EM is also affecting my hands
Anyone in the USVI, I would recommend Dr. Carolyn Merritt, the dermatologist who first diagnosed me on St. Croix. She had seen only one other case when she was in med school in the States. I am not sure of her address, as she has moved her office, but she is still on island.
Hi there Iâm from Ireland and would love to know more about the doctor and your experience,there is no one in Ireland with any knowledge or experience and Iâm pretty desperate Ann Marie x
In Columbia, SC, US
I see an entire physiciansâ practice group called University Specialty Clinics. It is attached to a teaching hospital (Palmetto Richland), and has the most curious and intelligent physicians across the board. EM is my fifth official autoimmune diagnosis (official as of today, hooray), and this is the only place that can treat every crazy issue that pops up with me. Different floors have different specialists: Iâve seen physicians there for everything from ob/gyn to endocrinology, who are all researching interesting things in their fields. I just moved to Dr. David Giovannini, part of the internal medicine group, as my primary, and he is excellent so far. Iâve had several primary physicians in this particular group, and they always really consider things from several angles, and are open to trying different therapies to help. So impressed! Highly recommend the whole building.
My heart breaks for those who are unable to have access to good quality medical support, itâs tough enough to navigate these issues without having to fight for good care. Thank you for compiling this list!
The name of the neurologist is hedi orim she is with st lukes in merdian also dr mark harris is with idaho pain management in merdian both very good
Hi Lacey, I am from Gladwin, Michigan and have just come down with EM. Very frustrated and depressed. Did you have success with the doctor at U of M in Ann Arbor? Hope to hear from you, Mary
Just wondering if the doctor in Asheville was able to help you? Still searching,
My neurologist Dr. Selena Ellis is in Berkeley CA. It takes about 2 months to get in to see her initially, but she now has 3 EM patients, is very interested, and willing to read research, diagnose, and try different remedies. She is the only doc I have found who told me she would love to see more EM patients, and was going to go on our site to see what she could learn. She is also highly respected by all the physicians I have met or know. Her info is : 3000 Colby St, suite 101 Berkeley CA 94705, phone number 510 â â â â
Hi I see professor Chris Denton at the London free hospital uk, he does full testing and also runs a em raynauds clinic highly recommend
Orange County, California, USA
Dr. Ehab Mady
Coastal Vascular Medicine
351 Hospital Road, Suite 401
Newport Beach, CA 92663
My primary physician suspected EM and referred me to Dr. Mady. He is a wonderful doctor!
I was diagnosed by Dr Mark Davis at Mayo Clinic then have been seeing Dr Kincaid at IU health every 6 months for follow up because his name was found in a database for EM. He has not tried one single thing to try and relieve my pain in the 3 years I have been seeing him. He is a very nice doctor, he spends a good deal of time and is knowledgeable, but for me has not prescribed any medications, procedures etc⌠He is waiting for something new to come up when I know there are things that I havenât tried yet. Iâm very frustrated and am working to get back in to see Dr. Davis.