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Idiopathic Small Fiber Neuropathy Research
This coming June, I will make a journey to the Mayo Clinic in Rochester, Minnesota seeking answers to my diagnosis of idiopathic small fiber neuropathy. This will be my last major effort in getting some kind of relief. I was diagnosed about 5 years ago (skin biopsy) and have tried gaba, Lyrica and Cymbalta. I am currently taking 300 mg of gaba ( got as high as 2,400 but it’s useless) and 60mg of Cymbalta. I retired from the pharmaceutical industry after 40 years, and was 62 when diagnosed. My major complaint is burning feet, especially the bottom of my feet. I exercise routinely.
From my research it appears that there is not a lot of research on the etiology of neuropathy, but more on palliative treatment, and not much of that. Mayo is considered the #1 neurology hospital in the country. Does anyone have any first hand information as to what research is taking place there, if any?
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Good morning, drdianeschneider (@drdianeschneider)
Nor did I look forward to a second EMG, but my neuro strongly advised, and once I'd had it and heard the neuro says he saw little or no progression, I was delighted I'd consented.
"Walking on bubble wrap … " What a perfect way of describing what poor balance feels like! A few years ago, my partner and I gave up our mountain cabin because our outhouse was a "short" forest walk from the front porch. Traveling to and from the outhouse, especially at night (and often with some urgency 🙂 ), was just like you say: hiking on "bubble wrap"!
Cheers!
Ray (@ray666)
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2 ReactionsInteresting new articles on neuropathy research in my latest Foundation for Peripheral Neuropathy newsletter...
Discovery Raises Prospect of New Neuropathy Treatments
https://neuropathyjournal.org/discovery-raises-prospect-new-neuropathy-treatments/?blm_aid=116106
Driving neuropathy research forward: FPN meets with the NIH
https://www.foundationforpn.org/nih-neuropathy-meeting/?blm_aid=116106
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6 Reactions@ray666 Did you ever try any diet modification? Reduce sugar and Carbs? R-ALA? Benfotiamine? Ever been tested for Lyme disease?
Hi John, I like the first article you presented. It makes me think that a simple, harmless approach may have some scientific validity. Using moisturizing cream, and/or essential oils, is recommended by some for PN. Perhaps it may work by healing skin damaged by the enzyme mentioned in the article, even if only temporarily. I admit to being very lazy about doing this, and intend to do it more often. It couldn't hurt, and may allow me to get back my job as a leg model.
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4 ReactionsHi Jeff, My days of being a leg model are long gone 😂 but I do put a moisturizer on my feet and legs every night just to hopefully help with the possibility of the nerves getting better.
I tend to overlook total skin care too so good suggestion.
I also laughed at your leg model comment. We need a laugh reaction option! 🤣
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1 ReactionInteresting that the one article indicates that PN seemed to be caused by damage on skin epidermis and that Winsantors treatment they are in stage 3 clinical trials is applied topically to the skin and was found effective in stage 2 trials.
Look up winsantor. They have stage 2 clinical trials of topical pirenzepine that has been shown to be effective. They are struggling to get funding to complete stage 3 trials.
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1 ReactionI'm sure this comes too late to help but I use my potty chair that I got for my hip replacement for my night time needs. Our regular bathroom is too far at night. Check into it.
Hi, Sue
We gave up our mountain hideaway for a number of reasons, only one reason was the outhouse being so far away that going there, for a guy with balance "issues," promised to be a real challenge. Other reasons for giving up the cabin were things like too many city folk (and I'm "city folk") puttering the nearby trails on their Satanic ATVs. We'd considered putting a potty chair beneath the porch, but realized it'd just be come-on for nightime bears. 🙂
Here's wishing you a fine weekend!
Ray (@ray666)
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