What type of doctor is best for diagnosing EM? I've been back and forth to many differetn family doctors as well as a Rheumatologist and none of them know what was going on with my hands and feet. Then I finally found a site mentioning EM and it totally explained all of my symptoms. Where should I go next?
Very few doctors have even heard of EM so it makes diagnosis a bit of a pain to say the least!
Try checking on the not quite finished listing of doctors here and if you don't find one n your area you could try checking with Mads. She is in the process of trying to put together a more complete list so she may have a name that hasn't been added yet. If you can't find a doctor in your area familiar with EM then I would Start a photo diary with your symptoms. What causes them? what makes them better? Then I would research here through past posts for links to documents that you can bring to your doctor describing EM and it's potential treatments.
I have found it quite common that you have to teach your doctor about EM and then you can work together to find a treatment that works best for you. Some of the types of doctors that help are...Rheumatologists , neurologists , dermatologists , and some can get help from their general practitioner. The most important part in choosing the right doctor is if they are humble enough to learn and admit they don't know it all and a curious doctor is a big plus. If you can find one with knowledge on EM that is a plus but not necessary or even possible for some people.
Just remember to take photos with you because you may not flare in the doctors office and if they don't believe you or think you crazy do not be discouraged and just move on to the next doctor. It took me two years to get a diagnosis but then I wasn't familiar with it so I couldn't share the possibility of EM with my doctors. I now have a team of doctors consisting of a rheumatologist , Family doctor and pain specialist working with me to try and find a successful treatment.
I forgot to mention the pain specialist as a possible doctor who could help diagnose and treat your symptoms.
I hope you find someone to help you soon. Just don't get discouraged and never give up. If they don't listen or care just move on! there are plenty of doctors in the sea!
I'm just checking in to see if you have found a doctor to help with your diagnosis yet? If you haven't yocaseu might want to try sending Mads a message and asking if she knows of one in your area. she is trying to get a list together but it is slow going both because there are few doctors out there and she only gets the names others have shared with her and poor girl is trying to get what she does have put into an organized list and she has quite a bad case of EM that even makes typing and sitting at the computer difficult for to long but she is going as fast as she can!
I am sure if you asked her she would take a look at what she has and if there is someone in your area she will send you the name. If she doesn't have a recommendation I guess it's back to the hard way but a way that I had suggested. I hope you have found some help.
I am writing because I too have seen every type of specialist and no one understood- my neurologist had heard of EM but he doesn't do anything in particular. I saw on this site that a few people are going to the Mayo Clinic to see Dr. Mark Davis. I looked him up and saw he is a dermatologist. I called my dermatologist and made the nurse ask him if he knew about EM before I went to see him. I saw him last week and he is the first person who told me to try the aspirin therapy which is supposed to be the first step in seeing if anything will make the EM behave. I am supposed to take an aspirin a day everyday for 3 weeks and then if I see no improvement go up to 2 a day for three more weeks.
In the meantime, I was feeling very down last week and I did email Mads and ask her if she had anyone on the list of doctors who was in or near NYC.. She gave me the name of someone yesterday. And guess what?? He is a dermatologist who specializes in Rheumatologic dermatology. Makes sense if you think about that... So I am calling his office tomorrow.. I wonder if a dermatologist would be a good place to start for you?? Please email Mads if you haven't done so already - she is amazingly helpful as is everyone on this site.
Check this out. Might help