I live in Birmingham and was diagnosed with EM by a rheumatologist just before Christmas. I have had it for 2 years but had diagnosed myself about 18months ago having seen immunolist , endocrinologist and dermatologists. He said the best person to deal with it was the GP. Really, when they even ask how to spell it.
I have been looking on here to find a consultant. Dr Bennett won’t see me as I don’t have primary. Is Dr Chris Bennett the best dr to see? I wondered having read a couple of posts saying he wasn’t that interested. What about Dr Michael Lunn who I read will take secondary.
My illness started with a red rash{that was resolved eventually with steroids) burning red face, warm hands that have now become much more of an issue and really sore, and some warmth and tingling on shins. Mostly heat induced but now can flare anytime, and especially bad at night.
Do any of the doctors try to find the cause if it is secondary?
I’m not from Louisiana so can’t help with a doctor. Did you go to the TEA site and see if there are any doctors near you? I found one called Dr. Lose, not sure if he’s near you or not.
The neuro who saw me said I was primary but I have lupus, so not sure how he came up with Primary. He gave me gabapentin…he really didn’t know how to treat it…I went to a pain mgmt doctor first and he gave me Lyrica which made me brain dead. If you have one of the secondary causes on the list, then they will say it’s secondary, hopefully. But for your Rheum to say “let the GP treat it”, is very odd.
You’re on the right track and being proactive about your care will make a lot of difference. You said you saw a Neurologist, Rheumo and Dermatologist, but while all of these treat autoimmune disease that have the symptoms that we do, you might want to consider an Oncology Dermatologist. The reason being that many people who have secondary nerve damage whether actually Erythromelalgia or not, have had their immune system toxically altered by either illness, injuries, medications even just the bleach in your laundry room can cause some of these symptoms.
Try to get access to a Major Medical center where they can identify how and when your body started these symptoms so that they can hopefully trace back to the actual cause.
I used a time line back to before I became ill with Sjorgens Syndrome and the page just “came alive.” I lost my husband to cancer a few years before the Sjorgens symptoms started in 2012.
There are several scientific studies out now confirming how much severe trauma and stress can breakdown your immune system. I never had any health issues before he became sick. But it was four long years of watching him suffer. I think a lot of life’s stress catches up with many of us.