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Dec 25, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

@iceblue – @burningfeet here. Yes, SF nerves diminish with age. Samples would be age adjusted and there is a normal range as a fucntion of age. Pam

Dec 25, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

@helennicola – @burning feet here again. Yes I do know Dr. Levine has a financial interest in Corinthian Reference Lab. So what I would say about all this is either 1. The first biopsy was not done correctly or 2. The first biopsy was correct and the second showed the nerves grew back. There are other possibilities 3. 4. etc… too, but let's assume one of these two. The Dr. said and I quote "The burning feet was due to SFN (he also said the first biopsy was done incorrectly so how would one know?) due to a virus or something that went away". The second biopsy showed this was true (3. or this second biopsy could have been done incorrectly also). It is my understanding that small fiber nerves can grow back but take a long time to do this and usually because whatever was causing the SFN was removed from the equation…certainly not in one month however. I am attaching the report from Corinthian. My original biopsy showed 1.3/mm in the foot and 0.3/mm in the lower leg. The one result was slightly lower than normal but not low. Those "normal" ranges are age adjusted as these nerves do diminish with age. The significantly versus mild for the lower thigh comments in the report is confusing and I will discuss this discrepancy with the Dr. at my next appointment. I did get color photos of the epidermis and dermis with this report but they are difficult to see…So, my experience with the biopsy technique has not been conclusive so perhaps it is not worth having as you suggest…Pam

Dec 24, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

@lisalucier – Hi Lisa, The results of the 2nd biopsy at the "certified" lab showed that I did not have Small Fiber Neuropathy. All of my nerve fiber densities (at three locations) were normal for my age. One was very slightly below normal but not much. These results were amazingly different than the first biopsy done this past summer which showed my epidermal nerves "severely" reduced in the two locations biopsied. For those inquiring about my second opinion, yes, my second opinion and second biopsy was ordered by a neurologist. In fact, it was ordered by Dr. Todd Levine who actually designed the protocol for the nerve biopsy test. Also, I never considered getting the "stem cell injections" from the Podiatrist. I had researched this treatment (actually with exesomes produced by stem cells). These exesomes do show promise but so far have not been fully researched and tested on humans. BTW Dr. Levine wrote the "bible" on SFN which is the book mentioned previously on this forum. I see him in February to review the results of the biopsy. The good news is the burning in my feet has subsided. However, I am still taking the Cymbalta and Phenytoin 10% compounded topical. I am not convinced nerves can grow back in a month although Dr. Levine seem to think this might be a possibility. I never found out what caused the supposed SFN and I'd still like to know. I'll keep searching as it may come back this summer when it is 120 deg out! Pam

Dec 22, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

@katec I've been on the Phenytoin cream and 30 mg Cymbalta for several months. I am reluctant to stop. See Dr Levine in Feb. Will decide then what to do. The burning feet this summer was excrusiating. I lost three months of my life. Not sure what to think…Pam

Dec 22, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

@katec Results of second biopsy showed I did not have SFPN! What a surprise. After my podiatrist indicated my biopsy said I has essentially no small fiber nerves left in my epidermis. He wanted to give me stem cell injections for $2,500.00 each and no insurance coverage…something's wrong here…all ENFD results were negative for SFN. Pam

Dec 22, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

I thought SFP was "Small Fiber Polyneuropathy"…a special form of SFN which progresses in a socking and glove fashion from usually the feet upward…I just had a second skin biopsy for this condition…Pam @burningfeetinphoenix

Dec 13, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

@lisalucier@burningfeetinphoenix here. Hi Lisa. Thanks for your inquiry. Well, the burning feet miracuously went away! I am still on the 30 mg of Cymbalta and using the compounded Phenytoin 10% topical. I have seen Dr. Levine and he thinks the SFN "went away and the nerves grew back". However, I decided to go through with a 2nd punch biopsy as the previous neurologist I saw recommended this as the first biopsy was done at a non-certified lab. Dr. Levine suggested I try going off the meds to see if the SFN has indeed gone away. I am still skeptical as I found no reports of SFN just going away. However, Dr. Todd Levine is a an expert on SFN and has written a book on it as well as many scholarly articles. He has never indicated in any of those papers that SFN can go away unless the cause is found and treated. Normally it progresses over time…The results of the second biopsy will be ready this coming Monday, 12/16. I am waiting anxiously for those results, For now I can wear socks and my hiking and running shoes. I can sleep with socks on under the covers! I am back to trail running and hiking…I sure hope this lasts. Thanks for asking. Pam

Nov 30, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

@lorirenee1 @hotfooted Hi p @burningfeetinphoenix here. Thanks for the info. I, fortunately, no longer have burning feet…and my neurologist thinks my SFN has gone away. I am grateful but I know that SFN cannot just "go away". I saw the third neurologist in that office last Wednesday for a second punch biopsy and she said I did not need it despite the first Dr. scheduling me for this procedure. He and the second Dr. thought the first biopsy was not done correctly. Now, what had appeared I to be a serious lifelong incurable condition that would only progress, appears to be now an "undiagnosed" condition. The second Dr. told me to go off the 30 mg/day of Cymbalta and the compounded Phenytoin 10% topical cream which I thought were the reason my burning feet went away. I am reluctant to do this as I do not want the burning feet to come back. The burning feet started last April and not only felt like they were on fire but the toes were hot to touch as well. Now my feet feel perfectly normal again…the first biopsy showed virtually zero nerve fibers in the epidermis of my foot and calf as well as no sweat glands. So I am back to square one in terms of a diagnosis and fear that the burning will come back. The Phenytoin 10% I believe has helped, not only with the burning but with the wound healing on my feet which, despite the Dr's telling me was unrelated to the SFN, I disagreed with completely. That has also subsided. When I had the worst burning I used Sarna lotion with menthol and camphor. I also ran a fan or A/C on the feet continuously. It was a nightmare. Oh and BTW the second neurologist said that "you probably had a virus and it is now gone and the nerves have grown back". I am not aware of any virus that causes SFN without other symptoms…and one that just goes away the the nerves grow back in a month's time. Needless to say I am frustrated but for now I am at least not in pain. I am waiting anxiously for the nerve biopsy results due back in six weeks. This time I will get my results directly from the lab and speak to the pathologist directly… Pam