Small Fiber Neuropathy: Book Recommendation

Jager, thank you for your reply, The Dr. has not given me and cause for my SFN, My daughter is 53 years old. Genetics can and do play a roll in developing the disorder but is only about 5 % to blame, for the most part SFN is still a mystery. There is so much more to learn about this disease. While research is ongoing, for those of us who have it, the results can't come soon enough. I was borderline diabetic for years(5) with an A1C never over 6, I took Metformin for about 5 years till my A1C came back under 6 and I was having episodes of hypoglycemia so the Dr took me off the med all together and I've been fine, so I have to question diabetes as the sole cause of Lg Fiber Neuropathy.. When I ask what the cause was, I was told it could be this or that , in other words they don;t know what caused it. As for environmental risk factors, the only one I would know of is that I smoke and so does my daughter which doesn't help I am sure, but is not the cause.. All my lab work comes back fine as does my daughters. Guess we will just have to wait and see. thanks again for your reply, God Bless, Jeanie

Well, God Bless you and your daughter to Jeanie. It is a terrible disease seeking a cause(s). I'm amazed at the different approached doctors have tried with people who post on this site. Nothing seems to work well. John Bishop, the site moderator, has reported success with his approach which, sadly, I have not explored yet due to pressing demands on my time at the moment but I will soon as I've exhausted all other approaches. Thanks for your reply.

Hi, @rwinney - @johnbishop may be aware of whether any others have mentioned experiencing small fiber turning into large fiber and what the progression of time was between.

Thank you Lisa.
~Rachel

Hi Rachel @rwinney, That's really a good question but I'm not sure of the answer. I think it's possible to have both small and large fiber neuropathy together but the only reference I could find was related to diabetic neuropathy.

Small- and Large-Fiber Neuropathy After 40 Years of Type 1 Diabetes
-- https://care.diabetesjournals.org/content/36/11/3712

The Neuropathy Commons website has one of the better overviews of neuropathy that may be helpful.
-- https://neuropathycommons.org/neuropathy/neuropathy-overview

John

Thanks John. I will check it out.

Hi John
I am also wondering if there is a way I can learn of the protocol you speak of, to slow progression, considering I am not a Facebook user.

Hi Rachel, Unfortunately Facebook is the Groups only method of communicating with other members and their videos and files sections that contain a lot of the research information. I'm not a big fan of Facebook but I try to avoid all of garbage on it and am a little selective on adding friends. If you don't have a Facebook account, you could create one specifically to join the group and then lock down the security privace settings.

How to Lock Down Your Facebook Privacy Settings
-- https://www.laptopmag.com/articles/facebook-privacy-settings

John

Ok. I'll give it some thought. Thanks a bunch!
Last question regarding the protocol...is it basically a criteria of supplements which each individual purchases independently or is this a "business" with a site to purchase supplements from?

Hi Rachel, The protocol is a criteria of specific supplements of the highest available quality. The protocol was put together by trial and error by the groups leader who then started the closed Facebook group with the desire to help others in the same situation. The group is not a business but they are a 501c3 non profit organization and they do help some less fortunate members with a kick start supply of the supplements through the donations of other members. The website - http://solutions2pnpd.com/ has the links to purchase each of the supplements through Amazon and their are links for the US, Canada, and the UK. There are also members in other parts of the world that have found where they can buy equivalent supplements of the same strength or better and they maintain a list of where to buy in their Files secton of the Facebook group. For the US, the only supplement the group sells is the Hemp oil and that's because early on a lot of us got expired/spoiled hemp oil ordering from Amazon and their different distributors. So the Facebook groups leader became the middle man with the manufacturer of the hemp oil in Canada and gets drop shipments to his house in Florida where he has a commerical refrigerator and can store a small supply to ship directly to members. I think a small charge is added above the actual cost of the hemp oil and this money is put into the Help Another Member (HAM) fund.

I can understand folks who are skeptical as I am always skeptical until I figure it out for myself. I was looking for an alternative treatment and something more natural since I already knew there weren't any drugs that address numbness for neuropathy. I joined the group when it was less than 500 members and it's now close to 9K members. It doesn't cost anything to join, read the new member welcome which explains what the group is about and how to start. Then you have access to all their research by using the Files section of their Facebook group and you can read and determine if you think it will help or not. I don't have the pain and only suffer the numbness but I still worry about the progression of my small fiber PN. I'm 3 years taking the protocol and I feel that my PN has not gotten worse. Granted after the initial 2 months when it seemed to receed a little I haven't made any further progress as far as getting rid of the PN. I was hopeful but it only reinforced to me that there is no cure for PN. The best I can hope for is to slow or stop the progression. I think each member has to make the decision for themselves by learning as much as they can about the disease/condition and doing what they can to make it better.

Good luck whatever you decide. I know this is a awful and painful condition for a lot of members and their are a lot of scams out there taking advantage of us so it does pay to be careful and check things out first.