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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
@rwinney...I just saw your post! Rather disappointing. I have my appointment this week. I expect the same...it is disheartening. Will keep you updated. I am pretty much starting out on this journey so there is so much I do not know yet. It sounds so hopeless though. I did get the prescription for compounded Phenyloin 10%. Was faxed to the pharmacy. I hope to get a call soon to pick it up. I am not too impressed by the topical PEA so far but the capsules are definitely a "mood enhancer". I am surprised that by now that I have not closed myself in a closet and died from my burning feet! Right now I am dealing with wound healing on my feet due to loss of sweat glands an circulation do to no innervation from the dead and dying nerve fibers. The areas of wounds not healed is where the burning is most intense because the boundary between the dermis and epidermis is being exposed to external heat. Sweating, also controlled by these nerves that stimulate the sweat glands (mine are almost gone in my feet according to the punch biopsy results), provide about 50% of the healing mechanism of wound healing. So the calluses turned in to wounds (because I was pool jogging over an hour a day all summer and the chlorine dried out the skin even worse than the lack of sweat). I am getting Laytex waterproof swimming socks to fix this problem. I am also going to see a wound care Dr. I think this will help a lot of the burning feet problem although it will never go away...as I am slowly finding out....Sorry for the rambling but I am, as you are, frustrated beyond words. It is odd that there has been no discussion in this forum on wound healing problems due to SFN?? Not sure yet if I understand that "protocol" John and others are talking about...It sounds promising. Pam
Replies to "@rwinney...I just saw your post! Rather disappointing. I have my appointment this week. I expect the..."
@burningfeetinphoenix
Hope you will let us know how well the Phenytoin works. Oral Phenytoin/Dilantin is what doctors believe caused my Neuropathy (axonal shrinkage and demyelination.)
Your burning may improve, possibly go away. Mine did although the numbness is worse but it’s better than the burning, stinging and the awful pain.
Jake
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Hey Pam
If there's time during your appointment, would you mind getting Dr. Levine's thoughts on Low Dose Neltrexone? It appears to be a promising compromise to pain relief without using opiods, tramadol etc...
SFN definitely gets in the way of proper healing. Maybe you can start a new thread. Last year I had one hell of a time healing a Chilblains outbreak on my toes. I also sweat which for me was/is big part of b12 deficiency, can be hydro, can be early menopause....you get my drift but, also SFN can be culprit!
My personal choice regarding the supplement Protocol thru FB (as I'm not on any form of social media) was to utilize it's suggested products and protocol of dosing. I've ordered independently thru Amazon. Slightly altered a couple of items from liquid to capsule for now and waiting to jump b12 that high until I'm tested in 2 weeks. (Had recently stopped getting injections and went to oral).
Because Dr. Argoff won't weigh in or read Protocol bc he is truly not trained in supplements, I've decided to request my own blood testing of any levels I feel may be compromised based on my research of harmful over/under.
Who's knows...nothing to lose but money as long as I'm medically safe and that sure can be a crap shoot! Now that I haven't worked for 2 years, it would be nice to receive some compensation for my medical work as it essentially is my job!
All the best with those feet and keep us updated on your appointment. Good luck!!
Rachel