What type of doctor diagnosed you?

1

Hello. Still undiagnosed for the Erythromelalgia. I was wondering what type of Doctor diagnosed everyone. I guess I’ll see a bunch of that type until somone finally gets it.

Thanks!
A

2

I was diagnosed by a hematologist. However, he does not seem very knowledgable about treating EM, unless it’s related to PCV. With that said, it was still a relief to finally have a diagnosis. Good luck to you on your journey!

3

Yeah I’d like to know the answer to that too. The podiatrist was sending me to a pain specialist for lack of anyone else to send me to. I would think a Rheumatologist should know but I have to say, I hate Rheumatologists…most of them are very mean and hateful, and condescending when you are not a textbook case of something. I believe it’s autoimmune because everything that’s not treatable is autoimmune. In my case anyway.

4

I was diagnosed by a neurologist which my GP referred me to. He diagnosed peripheral neuropathy of small fibre nerves and when I queried erythromelalgia he said it was a type of peripheral neuropathy and the treatment was the same, so it didn’t matter whether I was diagnosed with that or EM. I do not know if this is accurate, however the treatment he prescribed is working so i am not arguing!

5

I have to say that I’m sharing your frustration with rheumatologists at the moment. Mine has started to get a little bit frustrated I think because my symptoms are not text book and she can’t figure out what is wrong with me. I wish she could understand that while she may see many people in a day that are experiencing awful things, these things are new to me and impact every aspect of my life. It feels like she is giving up on figuring it out, which is very frustrating to me.

6

I have been sick for over a decade with many things. I believe the EM is the underlying disease. I asked every doctor And specialist I came across for about 8 years about eryrhromelalgia. None had a clue. One told me I was stupid for hearing hoof beats and thinking zebras. Really condescendingly.

Of course, less than 3 months later I was diagnosed. By a podiatrist. He was so kind. He told me I was in incredible shape for having had such a terrible disease for so long. That I had obviously been doing everything I could to take care of myself. It was all I could do not to cry in his office.

I guess you don’t give up and keep trying. Story of our lives, right? And I think there is a section on this website that has a list of doctors that are familiar with EM and can hopefully help with diagnosis.