Hi Brenda, the burning, pain, and use of meds for neuropathy sounds very similar to my dad and his troubles with nueropathy pain. He tried everything including lyrica which helped for alittle while and then the pain came back. His podiatrist gave him a medicne called metanx and after a couple of months his pain went away and he is getting better every week. Something to talk to your Dr. about and see if works for you.

Hope this helps, Thank You,

Roggman

Roggman......does your Dad have Erythromelalgia? If so, I will be talking to my doctor about metanx on my next visit too. Thanks so much

I gather you are in the Atlanta area? You mentioned Emery. You may want to check out U. Ga in Athens. Or Mayo in Jacksonville Fl

--is merely a combination of methylated B-vitamins, including methylcobalamin B12 and methylfolate.

The components of Metanx can be bought over the counter without prescription--and given the need to take methylcobalamin B12 alone, without anything else to interfere with absorption, that may be a better option for some--but if one's insurance will allow one to get Metanx cheaply, on could certainly try it as an option. If not, it's components are available, as I said, and not too expensively.

Roggman and glenntaj,

Thanks for the info. My podiatrist prescribed metanx for me and I've been taking it since 2/15. Unfortunately, it hasn't done a thing for me. I did have blood work done a couple weeks ago and my b12 was extremely high, the range was up to 1000 and I was over 2500, so I've backed off the dose, to 1 per day instead of 2/day, per my endocrinologist.

My podiatrist said it might/might not work and I agreed to be a guinea pig since how could extra B6, B12 and folic acid hurt? (soluble version - methylcobalamin, etc.)

Wish it had worked for me. fyi, my insurance (cigna, then blue cross blue shield) paid for generic version.

Brenda

Hi Brenda, sorry it did not work for you as well but you never know long term use of metanx might eventually give you bennefit and some pain relief, like you said, how can it hurt. It took several different medicines befor dad found the one that worked for him.

Good luck to you and let us know your progress.

Roggman

I have EM and Raynauds too. I tried taking B12 and B1 last summer and it made my EM flare much worse. Alot of EM'ers find B vitamins make them flare.

Hi Rose,
I have EM and Raynauds also and am always interested in talking with others who share my disorder. Most here have PN (which I also have) but the EM/Ray is what is causing me all the problems and pain. So my question to you is would you mind sharing with me your story and what you have tried, what you benefited from and what really didn't work for you. I can do the same if you are interested. I really appreciate any insight you might share. Thank you so much, Sharon

I'm a but late getting in on this thread, but Hi to all.....I haven't been to the forum in a long time. Last time I was here, I had been diagnosed with PN and EM, but not many here had info on EM. Glad to see there are others meeting here to share their experiences. I also have a rare form of Vasculitis called Churg Strauss Syndrome, so I am a really "special" case. I am in the Southwest Atlanta area, and have yet to find a good doctor with either a working knowledge or a willingness to learn about EM, so I still deal with flares much of every day. I noticed several of you mentioning Atlanta.....is there a particular doctor here that one or more of you have had success with?
So far I have tried aspirin therapy, blood pressure meds, mag + calc, lyrica (which caused a problem with my vision), and one of the tricyclic (sp ?) meds to no avail. I am very sensitive to medications and have strange reations--usually the opposite of what is desired....so, I have been left with neurontin and a small dose of clonazepam. Trileptal helped the most of any, but a problem with my kidney function arose and it had to be stopped promptly. That was such a disappointment.
Also, have blood testing for JAK2?
Anyways, so glad to know you all are here.
Tina

TinaLou, I read your blog concerning steroid use making your EM worse. I've been on an inhaled steroid for years that is reported to occasionally cause Churg Strauss. It gave me killer PN/EM symptoms and am trying to wean off it but so far have not been able to stop the med entirely and still breathe. I seem to have developed steroid myopathy from it, haven't gotten definitive word from Dr yet but i think he suspected last visit. I have a lot of EM symptoms, stopped steroid for a couple of days and when I resumed I could feel the heat going back into my feet.

I haven't had any blood work for a couple of years, last time I did not have elevated eosinophiles but don't know what is going on at this point. I'd like to hear what symptoms you have with the Churg Strauss, I didn't think I had it but something new has been going on for the past few weeks and have been wondering a little. I occasionally get a severe pain starting behind my knee that radiates down and up my leg, it feels more vascular than neuropathic but I don't really know. Also have had some severe stomach pain, am being treated for ulcers but no one knows if I really have them, it was just a first step. Pain comes back as soon as I stop med. Have some crazy reactive airways too. I know its rare and I hope I don't have it, just asking as you have experience.
Thanks, Judi