Thanks guys. This is amazing!. Keep names coming. Ask your friends on this site if they have responded yet. Boy are we going to have an incredible database to help Em'ers.
God bless
mads x
Hi,
Dr. John Kincaid, Neurologist
Indiana University Health Neuroscience Center
Goodman Hall
355 W. 16th Street, Suite 4700
Indianapolis, IN 46202-2267
317-■■■■■■■■
Docteur Genevieve Matte
Neuro muscular neurologist
Montreal Canada
Notre Dame Hospital
I had no clue where to go after 6 Dr.s at Vanderbilt in Nashville,Tennessee I see My rheumatologist for 2 years now. But I usually bring information to him that I read and talk to him about it.He has been in touch with Dr. Davis at the Mayo clinic, but I am his 2nd patient in all his years of practice.
Dr.Fuchs
Vanderbilt Medical Center
Nashville,Tn.
Does not surprise me.This is a very rare disorder and obviously many doctors have not come across it. When I first developed symptoms, saw a dermatologist, who sent me to a rheumatologist , then a neurologist, back to another rheumatologist and another dermatologist. Had skin biopsy and nerve biopsy and none of those doctors had any idea what was wrong with me...that was in 1995, 1996....they finally sent me to the pain clinic at Toronto General Hospital, after three months they told me they could not help me...I did not see doctors again for my EM until two years ago...when someone here recommended my current doctor. Check on the site ,Mads is compiling a ist of doctors that treat EM all over the world. That is how I found my current doctor, who I really like. So far the meds I have tried have not helped but just have to keep at it. I am on disability and my family helps me,.
Mads, thank you again for the list of doctors. I saw and highly recommend Dr. Joseph Jorizzo, Weill Cornell Hospital, NYC, NY. He's a dermatologist - very well versed in all of this. I will keep the community posted on whether he helps me but so far I found him very knowledgeable and kind. http://www.weillcornell.org/physician/jjorizzo/
Hi, Jessa. I was also diagnosed two months ago. I see that you recommend Dr. Jorizzo in NYC, but I also find him at Wake Forest, North Carolina. Does he travel between the two facilities, or has he moved, I wonder?
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I'm sorry for you. Dr. Jorizzo mentioned being out of town each week because he teaches. I'm not sure if he sees patients there but you might call to find out. His NY office # is 646-■■■■■■■■. I'm waiting for my pharmacy to order the meds he prescribed...I'll keep everyone posted.
Thank you! I actually emailed him last night, and he answered almost immediately. He definitely has an office at Wake Forest Baptist Health (NC). It's very difficult for me to travel, even the 2-hour ride to his office, so I might hold up a bit and see if he's been able to provide you with any pain relief. I'm amazed and grateful to find one of his patients. Your experience with him might benefit many—thanks again for sharing.
He's very caring and it was comforting to have someone who understood the mechanics of all this. Perhaps if he's too far from you he or someone at Wake Forest could recommend someone closer? I'll keep you posted on my progress. Be well.
Hi Gourav. Could you let me know who diagnosed you/what clinic. We have no names for India in the Dr directory. Having one would be fantastic help.
I have posted lots of information on the post information for new EM members. Take a look. Its useful to print off and take to show your Dr- helps better educate and raises awareness. If you have any questions please ask. We are all here to help and support
Wishing you a 'comfortable' evening
God bless
mads
Great news re Dr appointment Gourav. Let us know how you get on. A lot of us take aspirin for vasodilation. If you can relieve swelling its a major plus.Swelling can.cause other problems ie: lymphatic, thrombotic etc..My legs were actually 3 times the normal size at one stage.
Glad to have you with us
God bless
mads.
Dr. Robert Batson - vascular surgeon with Louisiana State University Health System.
Unfortunately due to the nature of the disease it is very had to get diagnosed since no test will show EM and most often times patient's symptoms are gone by the time they get medical attention. Best advice is to see an internal specialist who deals with 'bizarre' cases. A geneticist may also be able to help considering it is a genetic disease. They may be the most knowledgeable on EM. Even if the do not know what EM is they should be able to check the gene that is causing EM and may be able to give the best advice for treatment. Just a thought.
Also EM occurs when there is a abnormality (mutation) in the gene called SCN9A. This mutation causes the action potential of the sodium channels to behave abnormally. Action potential is a reaction that consists of potassium and sodium. In a person with EM the SCN9A mutation causes the sodium channels to act differently which means a normal action potential reaction can not occur. That is what is believed to cause a lot of the symptoms. (That is why a geneticist might be able to help.)
Please continue to message me names Guys. We are so grateful for your help. Ask your LWE friends if they have recommendations.
God bless mads x
Gourav - can not find your Dr. Please give me the full name and address. Thanks
I was diagnosed by myself as all my tests were coming back within normal ranges, but I knew that was I was feeling was abnormal: I looked up "reverse Raynauds" and up popped EM! I showed my information to the team treating me and they agreed that it fit, so we began the treatments outlined and I began to feel better..
I'm used to having to do this as I have another rare disorder as well, and that took me 3 years to get it diagnosed.. -sigh- I wish I didn't have to fight so hard all the time, but glad I have the strength to do it!
My treatment team was the admitting doctor (which changed 3 times!), and my Rheumatologist: HE is AWESOME!
The Mayo Clinic in Minnesota have specialist who treat are interested in EM. Alina Delp bloged on this site in 2012 that she was going to start treatment there. I wonder how it went. Can anyone contact Alina Delp and ask?..
The interest in EM is a big thing, finding a provider who is excited about getting the answers, versus those that throw up there hands.
I diagnosed myself initially but diagnosis was confirmed by a neuromuscular dr within 5 min of meeting him. Thank god i was flared up at the time!!
I was then observed by another dr, a med student in same office, who said she had read about condition but had never seen a real case in person.