I also have Erythromelalgia and have also struggled to find a doctor that has ever heard of EM. It has taken 5 years to find someone, but I've finally found a neurologist who is younger and, while he has not directly treated any patients with Erythro, he encountered some patients during his residency. He may not know everything, but he asks questions to gain a better understanding of my pain, he takes the time to research EM in depth, and he has reached out to one of the leading experts on the disorder to consult on my case.

What kind of laser treatments have you had that have helped? I would do just about anything to decrease the frequency/intensity of the burning nerve pain in my hands, ears, and feet Also, do you have primary or secondary Erythro?

Thanks for sharing!