Thanks, mrsD. I will take a good look at Dr. Cohen's information. I will definitely show this to my neurologist.

And believe me, I keep my feet as cool as possible (not cold, though), or else suffer severe pain, and direct sun might as well be focused with a magnifying glass, it burns that much. But I didn't know that this was actually a "thing" even after reading about PN and such for years. I had never seen anything about it being a condition with a name. I just thought it was me.

You might try the new magnesium lotion some of us are using.

Dr. Cohen used oral magnesium I believe.

Morton's came out with an improved (over the old CVS one) recently.
It is available at WalMart affordably.

http://www.mortonsalt.com/for-your-h...-epsom-lotion/

Use it once a day, and apply about a quarter's diameter dollop to your instep and rub it in up to and including the ankles.

It is really really useful and helpful IMO.

Joan you sound EXACTLY like me.

Reading this again, reminds me that I may have this. Your picture is like me. Everything you said is me. Winter is better for me. Heat of any kind is hell. I had to quit a job due to heat (their AC was broke they wouldnt fix it)

But somehow knowing this may be what I have doesn't seem to help me fix it.

Funny MrsD rereading this old post I realize what the bumps were...it was NOT B12 or anything else, this is when I was going through withdraw from zyrtec.

Interesting to read that some folks have found therapies that are helpful for erythromelalgia. I think that could be what's going on for me. There is now genetic testing available in the US for mutations in the SCN9a gene, which is thought to be behind some erythromelalgia and up to 30% of idiopathic sensory peripheral neuropathy.

More on SCN9a: http://ghr.nlm.nih.gov/gene/SCN9A -- "More than 10 mutations in the SCN9A gene have been found to cause erythromelalgia." and, "Mutations in the SCN9A gene account for approximately 30 percent of cases of small fiber neuropathy."

If you're interested in seeing if your erythromelagia has an identifiable genetic cause, there is now testing for SCN9a mutations available in the US. I have a test kit from Transgenomic (http://www.transgenomic.com/labs/neurology) in Connecticut, and there's also a lab in Atlanta (http://www.medicalneurogenetics.com/) and one in Maryland (http://www.genedx.com/test-catalog/a...ne-sequencing/). It looks like both GeneDX and Transgenomic have departments that work on convincing health insurance to pay for the test.

I'm recognizing more erythromelagia symptoms in myself lately and I've had the "idiopathic small fiber neuropathy" label for about seven years. I'm very interested to see what this genetic test turns up for me. There's been testing available in Europe and Israel for several years now; the testing in the US is new (within the last 6 months). I should start a new thread on this, but I thought I'd let you know that there's testing available if you're interested.

I think it would be very helpful if you started a thread on this topic with your testing information on the SubForum above:

http://neurotalk.psychcentral.com/forum119.html

A title like: NEW, SFN gene testing and erythromelalgia

would be good because it has clear keywords for Google hits.

Thank you all for your input on this topic, and I will certainly read and learn from it.

Now for some big news:

On Friday, I saw a neurologist at the Cleveland Clinic, and he made a startling statement: I do not have PN at all, but instead I have something going on in my spine in the thoracic area, and it might be something they can fix. I know that everyone here knows what a huge about-face that is, compared to the generic "ideopathic neuropathy" bucket. I will post more on this as it unfolds--even start a thread if it might help someone else. It might be a life-changer, or it might be just another be another blind alley.

Right now, I'm fighting the impulse to dream about how it would be if this could be fixed. I know he could be wrong. I know this could be false hope. But at least I have to try by getting the MRI and giving the idea a chance.