Newly Diagnosed

I was just recently tentatively diagnosed with “early erythromelalgia”. I had seen both my podiatrist and my doctor about the symptoms I had been having for a couple of years and neither of them could figure out what it was. I asked to be referred to someone else, maybe a dermatologist, who might be able to tell me what I had. I only saw her for a few minutes, but I believe her diagnosis is accurate. When I got home and looked up EM on the Internet, the symptoms were bang on. She has ordered some blood tests (to rule out other things I think) and I don’t see her again until mid-December. I live in Northern Ontario and this doctor is a visiting dermatologist who only comes every two or three months. I have the feeling she doesn’t know much about this disease or its treatment as she prescribed me a cream called Protopic (tacrolimus ointment, 0.1%) for my feet. (Some doctors just feel like they need to give you a prescription to make you happy.) I looked it up and all I could find was that it is used to treat eczema or psoriasis; I couldn’t find anything at all about it being used for EM. It list skin cancer as a rare side effect, so I am not too keen on using it. Has anyone ever used this for EM???

Also, I am wondering if there is anyone else out there in Ontario who is seeing and can recommend a doctor who specializes in EM and its treatment? Thanks.


I'm not from Canada (currently from Indiana, USA), but an EM article I found had research contributed from a doctor in Ontario, CA. Michel Melanson, MD, FRCPC - Kingston, Ontario, CA

This neurologist contributed to EM research that was reported in the article below. Therefore, he may have some significant insight into EM and provide some help with treatment. Otherwise, he may have a recommendation of who you could contact in a city closer to you in Ontario.

"A novel Nav1.7 mutation producing carbamazepine-responsive erythromelalgia." article in Ann Neurol. 2009 Jun;65(6):733-41

Quote from the article:
"We now report a novel mutation (V400M) in a three-generation Canadian family in which pain is relieved by carbamazepine (CBZ)." Website -

He's at this hospital:
Kingston General Hospital
76 Stuart Street, Kingston, Ontario, K7L 2V7
Dr. Michel Melanson, a Neurologist and the Residency Training Program Director in Neurology at Kingston General Hospital

Hospital Website -
Southeastern Ontario’s leading centre for complex-acute and specialty care.

Thank you so much for your comments. I really appreciate you taking the time to reply. I will definitely look into this.

Hello Claudette,
What are your symptoms like. Hopefully you will find some good doctor's help with this condition and get some relief or cure from it. 'Hope you have a great week.

Claudette said:

Thank you so much for your comments. I really appreciate you taking the time to reply. I will definitely look into this.

Hi David!!

Is realy interesting this article.... thanks