My rheumatologist said I have EM but brushed me off saying there is no treatment for it! What type of doctor do I need to see for treatment? Can anyone recommend a doctor in the St. Louis area?
Sorry, I don't have a recommendation, Mary. Did you ever try Dr. McVey at KU Medical?
Hi Mary
I have found that MOST doctors, especially many specialists, don’t deal well with EM patients, because they don’t want to face the fact that there is NO TREATMENT OR ONE SIZED FITS ALL CURE! They don’t like feeling helpless, or whatever.
Seek a good-referenced neurologist or dermatologist. They have all had training or at least exposure in med school with EM. If possible, get a personal referral. I, too, have had spotty results w most other (non-specialty UNINFORMED PRIMARY CARE DOCS). Good luck.
I am fortunate enough to have the rare inherited form that has better treatment options…but, truth is, last seven years have been a long, hard, painful, misunderstood and lonely years. Thanks for listening, Mary. Let me know how it goes…take care,
Carol
I found a Dr. at the University of Rochester Medical Center, Dr. Elaine Gilmire, MD, PhD. It is in Rochester, NY and she is actually a Dermotologist (I would never have guessed a Dermotologist would treat EM). I called them and even found her intern to be very knowledgeable regarding EM and possible treatments.
I too had the same reaction from the Rheumatologist that diagnosed me.
Another possibility is the Mayo Clinic. They have facilities in Iowa, Minnesota, Wisconsin and Georgia.
That is all the information I have found in my search to find a doctor to treat EM.
I hope this helps. Take care. Kay
Hi Mary,
If you let me know areas around St Louis I can hopefully give you some names (Im in UK lol!).
Whilst there is no known cure for EM, there are many medications which Dr's may try you on in the hope that they help with symptom management. Medication is mostly a case of trial/error . A poly-pharmacy approach is advocated .
Notably there are various flare minimisation tactics which may/may not help discomfort .Please let me know if you would like details. I am in process of compiling a list which draws all EM'er tips together.
I am attaching some research that you may find useful. Educating ourselves as much as we can gives us strength when trying to get treatment and raise awareness of the syndrome.
God bless
mads
332-9.Erythromelalgiasymptomorsyndrome.pdf (143 KB) 333-em.clinicalstudy87cases.pdf (141 KB) 334-MedicationSense.comErythromelalgia.htm (15.4 KB)
Thank you so much mads! I live in Imperial, which is about 30 minutes South of downtown St. Louis. A doctor in or near South County would be nice, or Manchester, Ballwin, Fenton, Valley Park, St. Charles even.
I sure appreciate any advice or information.
Thank you so much for your time 
Hi Mary,
Closest i can find is I have 2 names for Missouri? Any good? Thats why im trying to compile list to help us all lol!.
God bless
mads