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Looking to connect with people who have non-diabetic neuropathy

Neuropathy | Last Active: 22 hours ago | Replies (915)
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@roslyn2314

Thanks for your reply. My diagnosis initially was made in the surgery of a neurologist..mHe did some walking tests most of which I failed then cold and feeling tests. Said it was SFN and said keep taking Endep and Lyrica. See you in a month for nerve conducting tests. These tests produced an extension of of the diagnosis Long fiber as well. Go off sugar .. See you in 2 months. So no talk of skin tests. He said something has happened to me prior to this .The only thing was a shingles vaccine. I think he likes to string appointments out at $500 a pop.
Since then I have been doing a bit of research. Apparently sugar alcohols empty carbs all exacerbate nerves ..So onto the diet we go to see if I improve
I am reading a book Sugar Crush by Dr Richard Jacoby neurologist who swears sugar is the root of all nerve problems. It’s an interesting read.
Will look into canabis. You can get it here in OZ now. Still can’t believe USA hasn’t got a cure for this .. It’s where all amazing things hatch.. The leaders in everything…maybe not ..Thanks again for your reply

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Replies to "Thanks for your reply. My diagnosis initially was made in the surgery of a neurologist..mHe did..."
Chris Trout, Volunteer Mentor | @artscaping | May 19, 2023

Good morning. Thanks for filling me in. I have a couple more thoughts....(which is unusual in the morning). I understand the nerve conducting tests. However, the standard for SFN is the skin biopsy which is a 10-second test. However, it has to be sent off for analysis which then enables the neurologist to know what capacity you now have in the nerve cells. Mine was .09 which was quite low.

Good for you doing research on your own. I usually start with the Mayo Clinic site. Then I go to the following sites for additional information:
https://www.foundationforpn.org/
https://neuropathycommons.org/

You may want to ask for some dietary help at this point. I gave up sugar (as best I can) coffee, and alcohol. Instead of a cocktail, I make a fruit/vegetable smoothie with my zero-sugar yogurt and some fruit crystals.

@roslyn, I noticed your expectation that a cure for neuropathy needs to be on someones priority list here in the USA. At this point, there is no cure. Nerve regeneration takes a long time and so far there has been no discovery of a "hurry up" button. What we do by sharing on Connect is find folks dealing with similar symptoms who have found mitigating solutions.

Please share the results of your research. There are thousands of folks who follow and read responses on Connect even though they, themselves, do not post. Your help is appreciated.

What was the "surgery of a neurologist" that you had done?
May you find comfort and ease.
Chris

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