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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@johnbishop

Hello @waltermc, It's not a gimmick and they are not selling anything. To help the members they have assembled a list of links on Amazon where to purchase each of the items. The hemp oil is sold and shipped by the groups leader for convenience and to guarantee freshness which we had a problem with in the early days of the group. A small percentage is added to the hemp oil cost for the H.A.M. (Help Another Member) program for members who can't afford the initial cost to give them a short term supply to get them started.

I have been a member of the group since Aug 2016 and have been taking the over the counter supplements the group suggests. While I only have numbness with my PN (idiopathic small fiber peripheral neuropathy) I feel that it has given me a new normal. When I started taking the supplements in Sept 2016 I had numbness just below both knees. After 2 months of taking the supplements I noticed the numbness seemed to have reduced to just above the ankles. I have not made any progress since then but it also does not seem to have gotten any worse so I'm happy with the results and continue to take the supplements. I'm always hoping for more progress but the bottom line is I am satisfied with my new normal if that's all it is.

The Solutions to Peripheral Neuropathy Pain & Discomfort group (501c3) -- http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. The group has over 8,000 members. Most of the members have pain associated with their neuropathy and the protocol of supplements has allowed them to taper off of the prescribed drugs and take only the supplements which treat the pain symptoms. This is not a cure but a natural way to help provide what the nerves need for nutrition to alleviate the pain without taking the common seizure medications used to treat neuropathy (my words).

If you decide to join the group, make sure you read all of the new member welcome information. It's vital to getting off to a good start. You can also do a search of the group for any questions you have. They also have a lot of informative Facebook Live videos hosted by the groups leader where members ask questions and share information.

Last but not least, there are a lot of advertised solutions to treat neuropathy and you definitely need to do your own research. Here's my story posted earlier on Connect on how I found the group and how it has helped me: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Good luck with whatever you decide.

John

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Replies to "Hello @waltermc, It's not a gimmick and they are not selling anything. To help the members..."

Hi John. I have idiopathic non diabetic small fiber PN. Have even been to Duke and Emory and diagnosis confirmed my Neurologist diagnosis. I have pain only in my feet and ankles which has progressed since diagnosed in 2003 but much worse in last year. I take lyrica and tramodol as needed. I don’t want to get on opioids. They scare me. Have tried anodyne and laser treatments but only gives temporary relief. What are the supplements that you are taking which are helping you? Thanks. Bruce