Originally Posted by Stacy2012 (Post 1117363)

I thought I had neuropathy for a long time, turns out I have erythromelalgia. Burning feet. Biggest thing that has helped me is a specific laser treatment that uses the avicenna laser. I tried Klaser and others but they did not work. I think many people are misdiagnosed with neuropathy since many doctors do not know what EM is. My neurologist doesn't know what it is but admits after reading my papers that it sounds like I have it. I quit using her.

Laser has been my life line.

Originally Posted by saraneely (Post 1281419)

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!

Originally Posted by briley7333 (Post 1268213)

GM Razzle51-

My PN started with numbness on soles of both feet. Over 5 yrs advanced to Severe Neuropathy, confirmed with Conductivity testing 4 times.
Take 3200 mg gabapentin and 6 mg ropiniole daily. Couldn't deal the manner in which Antidepressants interefered with my sleep. Stopped opiiates. Sedation and other common side effects became intolerable.

PN pain and periodic epidsodes of severe cramping are a daily challenge.
Consultations and testing with the best neurologists repeatedly confirmed PN and kSpinal Stenosis but without effective treatments or remediation of pain.

Moved from Detroit area where I was patient of U of M Dept of Neutology that did intervene with epidurals when crises occurred but now live in Tennessee where I'm continuing to search for a neurologist to provide ongoing PN care and pain mgmt.

I take the std supplements, Magnesium, B-12, alpha liproic acid, prescibed Vitamin-D.

Accupuncture was $70 / visit w/o noticeable benefit

My primary care is a DO that performs "Manipulation", that seems to be only non-drug therapy that's proven effective for me.
Could be worth investigating for your situation.

All the best,
Briley7333

Originally Posted by saraneely (Post 1281419)

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!