My doctor had never heard or seen of an EM patient previously to me. He referred me to a vascular surgeon. I decided to contact the surgeon to see if he was familiar with EM before making an appointment, paying hundreds of dollars for a consultation and wasting my time to discover he can’t help me. As I guessed, the vascular surgeon said he had never heard of EM either and recommended I saw a dermatologist instead. From my online research I have discovered that a dermatologist is not able to help with the treatment as well. Who is the best type of doctor to see regarding EM? I need help, do you recommend a neurologist instead?
The best type of doctor to see regarding EM is one who knows what it is and has treated it before. Erythromelalgia is technically dermatology, but many (most?) dermatologists have never heard of it. If you can get your health care provider to assist in finding a doctor who has treated it before, that would likely be more effective than cold calling doctors at random. My treating physician is an anesthesiologist/pain specialist.
Much depends on the cause as EM can be caused by a few things, which is part of the problem finding out which is causing your own. I too have been to all sorts of doctors and up to now haven't had any luck with any of them, as nobody I have seen has ever heard of it. As carterdk says best to find a doctor who knows about it, but that isn't an easy task, certainly where I live. It could be a neurology thing, rheumatoid arthritis or Polycythemia vera. Non of these are relevant to the people you have seen. These are all EM secondary. There is also the primary genetic type of EM. So, I am sure you can see why it's hard to find the right doctor to see.
Thankyou for your responses they are all very helpful. My doctor did some research on EM and after testing my blood he said I definetly don’t have polycythemia vera and he believes it to be a primary type of EM. Although I have only had my blood tested so far. It is extremely difficult finding a doctor to help rule it out completely as a secondary EM. At this point I have diagnosed myself because im not even sure which doctor can diagnose me with EM.
Dermatologists, one after another, were unable to help me but I got sent to a neurologist who diagnosed and has done his best to help. Over the years I was sent here there and everywhere for tests to eliminate diseases to which it could be secondary with no result. He is still trying bless him but really running out of ideas. He continues to say EM is a neurological problem but finding the cause is the difficulty.
My doctor says erythromelalgia is caused by defects in the voltage-gated sodium channels. I've had great success from taking a sodium channel blocker, though others here have found less success or been unable to take the drug i'm on due to side effects. That said, selective sodium channel blockers are the only treatment currently under investigation by pharmaceutical companies for erythromelalgia.
A number of these drugs are currently in clinical trials. They include Funapide, Raxatrigine, Ralfinamide, and still more that are only identified by a number (PF-05089771, DSP-2230). It's a near certainty some of us will be prescribed the aforementioned drugs once they receive regulatory approval.
Thankyou Nel, from my online research I have been reading that a neurologist is the best person to see regarding EM so I will definetly look into finding a neurologist in Sydney who has dealt with this before and maybe research a dermatologist as well. Thankyou for all your help, I’ve decided not to see this vascular surgeon after all especially that he has no experience working in this area.
Susan,
I saw a neurologist, the oldest one on staff at my local medical center, a guy who had been practicing for well over 30 years, and he had never treated erythromelalgia before. He had heard of the disease, but knew very little about it.
I saw doctors in the following order:
Primary Care Physician
Orthopedic Surgeon
Rheumatologist
Second Orthopedic Surgeon
Second Primary Care Physician
Second Rheumatologist
Hematologist
Neurologist
Allergist
Dermatologist
Second Dermatologist
Anesthesiologist/Pain Specialist (current treating physician)
After I saw the first dermatologist and was again met with complete ignorance, I contacted my health care provider and demanded they find a doctor experienced in treating the condition, since I was not having any luck doing it myself. They sent out a notice to all their physicians asking if anyone had experience treating erythromelalgia. That's how they were able to find the doctor who was eventually able to help me. They sent out that notice to literally thousands of doctors. They then screened respondents based on level of experience. I would never have been able to do that on my own.
That's why I suggested getting help from your health care provider.
Thankyou CarterDk, it’s such a shame that it seems we have to go through so much trouble to receive some help. I’m definetly going to speak to my Heath care provider and hopefully he can assist me in that search. That seems like the best thing I can do at this point. Also I’m aware that the following question has nothing to do with the topic title but does EM seem to get worse as time passes on? It started off as scratching and now it’s swelling and burning with redness, does it only get worse?
Not sure it can get better spontaneously but I am much better than I was at first because it took me two years to work out how to manage it and find medication to deal with the ŵorst aspects of my particular version of EM. And of course if they get to the bottom of why you have it and can treat that, the EM may be lessened too,
I agree with Nel. Mine was worst when I didn't know what I had and was inadvertently exacerbating it. It's been about a year since I first developed symptoms and mine has not worsened. It's better now because of the medication I take.
Well mine started around 10 years ago and to this day I still haven’t got an official diagnosis! I am in the UK and up to now I haven’t found one that has even heard of it never mind treating it. I know due to symptoms after looking here. I am off to the rheumatologist tomorrow but I know he has never heard of it. Consequently mine has gone worse all the time.