Hi all, I've not been in this group since (I'm ashamed to say) 2007. After being dx'd with Essential Tremor - I joined another group outsite NeuroTalk - fast forward till now; I have b-12 deficiency and began getting treated with supplemental b-12 (injections) back in 2007...unfortunately, there was already nerve damage in my face, hands, tips of fingers, lower legs/feet. PN was diagnosed shortly thereafter and I've managed it with over the counter pain meds...until recently. The burning in face, tops of my hands, tops of my feet, my shins and forearms has become unbearable; to the point of reducing me to put icepacks on my skin. Afraid of causing more damage, I went to a neuro who prescribed Neurotin 600mg 3x a day a month ago - no change. This week, the doctor gave me Lyrica 50mg 3x a day. I'm only a couple days into taking the drug, and I've gotten no relief..

Can anyone give some insight what else I might can do to reduce the burning in my skin? Don't EVEN mention going outside in the heat we've been having in Atlanta...I can't stand to go outside as the burning triples in the heat.

Thanks,...Jon

--that if you have a definitively diagnosed B12 deficiency, one of the best things you can do is continue to supplement with B12, to allow whatever repair can happen to happen--are you still doing that?

And it does not have to be through prescription injection--daily oral large-dose supplementation can be done on your own, and is generally at least as effective as periodic injection, often more so, as your body is constantly given B12. People who are deficient in B12 will generally need it for life, even if the cause of the deficiency is found.

Most of us here recommend getting methylcobalamin form, which is readily usable by the body (not cyanocobalamin, which has to jump through several metabolic hoops to become usable--just in case you have a polymorphism that interferes with your methylation chemistry). Doses range up to 5000mcg/day or more for people highly deficient, with 1000mcg/day being more of a maintenance dose. And methylcobalamin is now readily available through a number of on-line sources, and is just pennies a day.

Mrs D is on holiday but suggested Alkaseltzer, which I have been using at night with good results. Others here have been using Magnesium lotion to replace Epsom Salts baths. These are quick wins if they work for you and are definitely worth a try. Good luck

Thanks for your input; I've been severely b-12 deficient since discovered in 2006; I can no longer absorb b-12 naturally from foods; taking by mouth has never been effective for me - but you mention a new form I've not tried and will look into. Thanks again...!! I take 1cc of cyanocobalamin injections (breaking to .5cc weekly); if the other is more effective, I'm all for it and will ask. My b-12 levels now range from 850-1300, depending on the date of the blook taken. When b-12 deficiency was discovered, I had depleted to 178...needless to say, I was falling, tripping, hurting myself,etc - not to mention what the neurological impacts were to my cognitive functioning. ..thanks again!

--is designed to allow passive absorption of enough B12 (usually, the absorption rate is 1-2%, so figure on 5-10mcg from a 5000mcg dose) to start to rebuild stores and for availability to be raised enough for tissue use.

These large doses were specifically designed to get around the usual absorptive channels that are often compromised in people who don't have enough stomach acid to break B12 out of food, or who have (the misnamed condition, as it is not an anmeia per se, but can result in anemia) pernicious anemia.

Okay - doctor five years ago dx'd me with pernicious anemia...so, I've been taking injections of b-12 for years - 1ML every two weeks, or 0.05cc per week)...

Malawigirl08 - I bought magnesium lotion today from the Health store; it's actually a spray. Directions indicated spraying/rubbing thoroughly on arms/legs....what about face? Can I do this? Has anyone put magnesium lotion on their face?

I'm willing to try just about anything at this point...

Thanks,

Jon

Jon
Is this Magnesium Oil? I havent tried the lotion as I cant buy it in the UK yet but I sourced the oil which Mrs D was unsure whether it would be as good, the instructions said it could be used all over and I did put on my face but it did nip a lot. I am now putting it on the insides of my arms and all over my feet. My feet have improved in only two weeks although they do feel quite rubbery which feels strange but hey ho i can put up with it if there is less pain. Hopefully someone else will come along who has experience with the face, I only have PN in my feet.

Jon I have just read Sheltiemoms thread from today and she has had great results in her face from HylaTopic plus, maybe she will comment on this and give you more information.

Jon -

It's Sheltiemom - just read Malawigirl's post here at your topic and am answering her thought regarding your face burning.

My face from below the orbital rim bones to the jawline burned for months, would flush and even swell a little. That lasted from January 2010 when this neuropathy thing started until around late fall last year. But the facial skin redness and high level of sensitivity to touch were still there.

In May of this year, finally found a dermatologist worthy of the name who prescribed HylaTopic Plus emollient foam. It works as a moisturizer and on the redness. He also prescribed for very short-time use the topical steroid Desonide ointment. I used this once a day (instead of twice) for only 3 days and then began the HylaTopic once a day every day (although it can be used twice a day). It has worked wonders for me. My face was a red, peeling mess prior. He also said to wash the face with only lukewarm water (which I'd never done - always used a cleanser).

Just wondering whether Desonide and HTP could help you, and I certainly sympathize.

Good luck,

Sheltiemom18