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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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I’ve been taking it since 2016 and I believe it has helped slow or possibly stopped the progression with my idiopathic small fiber peripheral neuropathy.
Most of the supplements/vitamins in the protocol are also listed on the Foundation for Peripheral Neuropathy in the Complementary and Alternative Treatments under Supplements for Neuropathy here: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf. Also, The Protocol website has a Why the Protocol document under their FAQs here: https://theprotocolworks.com/faq/. I've attached a PDF copy of the Why the Protocol document along with links if you want to read more.
WHY THE PROTOCOL (WHY-THE-PROTOCOL.pdf)
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1 ReactionI should add that I only have numbness in my feet but it is not as bad as it was when I started in 2016 but that is subjective on my part. Many people have found that it has provided relief with their neuropathy pain but it's not an overnight fix and can take awhile.
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1 ReactionThanks
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1 ReactionI have the rebuilder 300 , I bought it july 2023 , hasn’t really worked well … comforting but not a cure
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2 ReactionsI also only have this problem in my feet , it has inched upwards to my knees in 3 years time
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3 ReactionsI tried a similar unit back in 2016 for a few months and it did nothing for the numbness in my feet. It was a Zopec DT-1200 and just another $400 wasted for me.
I wasted $1,000.00 on the rebuilder
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1 ReactionI never used anything specifically for my Neuropathy. However, I had Focal seizures so I tried Gabapentin to control them but it didn't help the seizures or Neuropathy. I also had pain issues and was eventually prescribed fentanyl which helped most but didn't get rid of the Neuropathy pain entirely. Any pills, creams, or medical devices I see on the iternet I immediately disregard.
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2 ReactionsA Product I was introduced to by a dermatologist for my burning itchy skin, is helping with part of my central nerve damage. It starts with no warning and is itchy all down my left side and around private parts. When scratched even very lightly it turns to a hot itchy burning sensation, that drives me, to distraction. She prescribed what’s called ”
Enstilar. A spray in a bottle, that while it feels greasy, has worked wonders in slowing down this terrible buring itch.
It’s made by Leo Pharma of Toronto. And I have been using this now for over a year, with excellent results.
I have no idea if it’s cost, because it’s covered here by our government ( thank goodness) Anyone going through this terrible burning itching should try this. Put it into one hand as it comes out sputtering and spitting. Then apply over the part of your skin that’s itching and burning.
I had to look this up - Enstilar is made of betamethasone (a corticosteroid) and calcipotriene (a form of Vit D). It is designed for skin problems, like psoriasis.
Glad you are getting relief.
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