Small Fiber Neuropathy BOOK!

Posted by rwinney @rwinney, Aug 18, 2019

Sorry for not thinking of this sooner to share with all of you. My neurologist Dr. Charles Argoff from Albany Medical College, NY collaborated on a book with other Drs (some from Mayo Clinic) called
SMALL FIBERS, BIG PROBLEMS
A comprehensive patient guide to small fiber neuropathy. He mentioned it to me when I was first diagnosed with SFN this past February. It was written in 2017 due to the growing numbers of patients suffering from the disease.

After my fast and furious internet research had become confusing, I ordered the book from Amazon. It is such a simply stated tool in understanding SFN. I referred to it quite often in the early stages and it helped justify alot of what I was feeling. It helped me and I hope it can help you too!

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@johnbishop

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

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Thanks John. I will check it out.

REPLY
@johnbishop

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

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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.

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@rwinney

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.

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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

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@johnbishop

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

Jump to this post

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?

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@rwinney

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?

Jump to this post

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.

Liked by rwinney, derrygirl

REPLY
@johnbishop

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.

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Thank you for going above and beyond in your explanation. You have provided good info…as always! 👍🏼

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When I clicked the Amazon link several other books on neuropathy came up. It's interesting that I never explored this possibility before as I've become used to assuming everything is on the Internet. Some of these books have promising tittles suggesting neuropathy can be cured and/or the symptoms ameliorated. So the reason for this post is to ask if anyone has read any of these books.

So rwinney, the book you mentioned sounds like it confirms the 'big problems' so many of us are having but does it offer any hope?
Thanks for posting.

Liked by sherryw

REPLY
@jager5210

When I clicked the Amazon link several other books on neuropathy came up. It's interesting that I never explored this possibility before as I've become used to assuming everything is on the Internet. Some of these books have promising tittles suggesting neuropathy can be cured and/or the symptoms ameliorated. So the reason for this post is to ask if anyone has read any of these books.

So rwinney, the book you mentioned sounds like it confirms the 'big problems' so many of us are having but does it offer any hope?
Thanks for posting.

Jump to this post

Unfortunately, it does not. However, I will say this, my Dr. (Argoff, one of the authors) told me that it is possible that nerves can regenerate but it may take may be 2-3 years. My opinion is that he was trying to comfort me with long term hope. I feel that if it can happen it may depend on the severity of your symptoms. Who knows. I also don't like be a pessimist.

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@johnbishop

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.

Jump to this post

Hello John
Don't mean to be a pest but, if it's not too bold of a question, what is the monthly cost of maintaining this protocol? I did go thru the link and obtained good information. I plan to share it with my Neurologist and seek his input. Should be interesting as it is an opposite approach. Thanks again and have a nice day!

REPLY

My internist, and maybe even my neurologist, told me that nerve growth is so slow it will not happen in one's lifetime. However, I read on the Internet, that there are 100 causes of neuropathy and that if the underlying cause is remedied, then in 50% of cases the neuropathy goes away. So who knows. I do know that the intensity of my pain varies with it having reached a 10 on a few occasions while on some days/nights it's below 3. My neurologist said this is 'normal' for neuropathies. I say BS. It just means that they do not have an understanding of the mediating variables.

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@jager5210

My internist, and maybe even my neurologist, told me that nerve growth is so slow it will not happen in one's lifetime. However, I read on the Internet, that there are 100 causes of neuropathy and that if the underlying cause is remedied, then in 50% of cases the neuropathy goes away. So who knows. I do know that the intensity of my pain varies with it having reached a 10 on a few occasions while on some days/nights it's below 3. My neurologist said this is 'normal' for neuropathies. I say BS. It just means that they do not have an understanding of the mediating variables.

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100% agree.

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@rwinney

Hello John
Don't mean to be a pest but, if it's not too bold of a question, what is the monthly cost of maintaining this protocol? I did go thru the link and obtained good information. I plan to share it with my Neurologist and seek his input. Should be interesting as it is an opposite approach. Thanks again and have a nice day!

Jump to this post

Hi Rachel @rwinney — that's not being a pest. ☺ I think the number is around 5 to 6 dollars a day when you average the cost of a 30 day supply but some of the items last more than 30 days. It's a great idea to run them by your neurologist. I ran them by my Mayo primary care doc who ran them by a Mayo pharmacist and the only comment I got back was the omega 3 and omega 6 were a little high. I kind of blew that away because I found a link on the Mayo site which I can't find again that showed higher values for therapeutic dosages for dealing with different health conditions.

Hope this helps! It is a gorgeous day outside – 71 degrees and sunny. Hard to believe Fall is right around the corner. I'm just hoping it doesn't get lost and Winter doesn't come early (hate it when that happens!).

REPLY
@johnbishop

Hi Rachel @rwinney — that's not being a pest. ☺ I think the number is around 5 to 6 dollars a day when you average the cost of a 30 day supply but some of the items last more than 30 days. It's a great idea to run them by your neurologist. I ran them by my Mayo primary care doc who ran them by a Mayo pharmacist and the only comment I got back was the omega 3 and omega 6 were a little high. I kind of blew that away because I found a link on the Mayo site which I can't find again that showed higher values for therapeutic dosages for dealing with different health conditions.

Hope this helps! It is a gorgeous day outside – 71 degrees and sunny. Hard to believe Fall is right around the corner. I'm just hoping it doesn't get lost and Winter doesn't come early (hate it when that happens!).

Jump to this post

Ahhh me too!! Here in NY we finally were able to turn off the air conditioning and open windows for fresh air!
I estimated around $150 – $200 per month on the protocol. Good to know. My infusions run me $160 per month in co-pays so not much difference.

REPLY

I am a nurse and have worked in the health insurance field for 2 decades, always trying to be a patient advocate. I advise everyone to go on the drug manufacturer website and check their patient assistance program. Many have a $0 co-pay coupon, with no financial info needed. Some are income based. Do your own research, often it will be very different than what the doctor's office will tell you as the drug companies have incentives for the physicians no to tell patients when there is a $0 or minimal co-pay available. Where there is a $0 co-pay you do not use our insurance, you simply print the coupon or take a picture of it with your phone and bring to the pharmacy. Also ask for home infusion it could be cheaper still. Another resource is a company called "Prescription Hope" it is income based, however worth looking into, if you qualify all prescriptions are $50/month supply. Again you do not use your insurance. Lastly, before you fill a prescription get the Mobile App of go the the website of GoodRx when you enter the drug name, it will give you a list of pharmacies and the cost of the drug, the difference between stores can be significant. Good Luck out there!

REPLY
@derrygirl

I am a nurse and have worked in the health insurance field for 2 decades, always trying to be a patient advocate. I advise everyone to go on the drug manufacturer website and check their patient assistance program. Many have a $0 co-pay coupon, with no financial info needed. Some are income based. Do your own research, often it will be very different than what the doctor's office will tell you as the drug companies have incentives for the physicians no to tell patients when there is a $0 or minimal co-pay available. Where there is a $0 co-pay you do not use our insurance, you simply print the coupon or take a picture of it with your phone and bring to the pharmacy. Also ask for home infusion it could be cheaper still. Another resource is a company called "Prescription Hope" it is income based, however worth looking into, if you qualify all prescriptions are $50/month supply. Again you do not use your insurance. Lastly, before you fill a prescription get the Mobile App of go the the website of GoodRx when you enter the drug name, it will give you a list of pharmacies and the cost of the drug, the difference between stores can be significant. Good Luck out there!

Jump to this post

WOW! Excellent information. I have tried to explain this in my own post but you got the point across much better! Such helpful advice and taught me more than I was already aware of. Great to have allies!!! Thank you.

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