My lessons learned about idopathic non-diabetic peripheral neuropathy

1. There are so many different forms of neuropathy that things said or done by individuals needs to be closely examined before you act on their recommendations.
2. There is a strong bias in PN info. When you examine medical literature from the far east or middle east or Europe the discussions on treatment are often different. Here the focus is on medical/big pharma approaches when neurologists talk of care.
3. I taught statistics, so I can say that medical references to PN are very, very, limited since the designs and stats used to come to conclusions about PN will take decades or at least many years. For example look at the Winsantor clinical trials.
4. Be careful in trying what people recommend since it can make your circumstances worse. Come to some conclusion about the physiological mechanisms at work. The mentors do a GREAT job of pointing people to relevant info.
5. If anyone says they can cure PN or improve PN and they have something to sell it is probably a scam. I've tried too many things when desperate. I also have wished for simple solutions.
6. There is often a dark side to PN. Depression is common among us. It is often hard to look at the positive versus the negative. Often people are saying have a great day etc. They had great upbringings or have resilient brains that were conditioned with good upbringings or wonderful experiences that helped them. I'm very lucky and have had a great life but it is hard to be positive every day!
7. There seem to be some metabolic issues that no one is talking about. For example I've been seen by 5 neurologists and diagnosed over and over. It seems like a financial windfall for many physicians since I get nothing from seeing them. I'm suspicious since I've taught hundreds of doctors.
8. In discussions with many health care providers people do seems to have some common problems that are not discussed. Many PN people have the following: diabetes (if you don't have it you will be treated like you have it almost always), high foot arch, thyroid disease, celiac disease (other common auto immune problems.) Look at what is recommended for these problems and you might find suggestions that work.
9. Do what you can to increase blood flow to your feet and hands. Talk to your neurologist about drugs like cilastizol that can improve blood flow to extremeties. Also look to topicals such as essential oils, castor oil, magnesium, and other products that you can confirm improve blood flow.
10. Exercise. Simply do what you can and find your limitations given your circumstances. There is always something that you can do to improve your blood flow.
11. Check your nutrition and supplements that you could use to assist your circumstances. Again don't rely on individuals who don't have sufficient educational training for changes that you might make. For example supplementing B 6 vitamins could be problematic to your condition.
12. On paper set up your plan. It requires some thoughtful consideration to making a plan. If you don't have a plan that you can examine and modify as you gain experience, well then you are likely to miss things as your condition deteriorates.
I wish you all good health and hope that a few of you can draw from my experiences. I am no expert and do not wish to provide guidance to anyone. Check with the mentors. They are properly trained to help you.

This one caught my attention @snagydude...
7. There seem to be some metabolic issues that no one is talking about. For example I've been seen by 5 neurologists and diagnosed over and over. It seems like a financial windfall for many physicians since I get nothing from seeing them. I'm suspicious since I've taught hundreds of doctors.
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Have been in the pre-diabetes category most of my adult life and have discussed diabetes vs pre-diabetes with all of my different primary care doctors, none of whom mentioned anything about the metabolic syndrome. Had I been clued in earlier I'd like to think I might have started working to change my lifestyle and eating habits before my neuropathy started progressing more noticeably. Probably wishful thinking on my part 🙃 I think I first learned about it while watching a Dr. Jay Wortman video on my weight loss journey. If anyone is interested in learning more about the metabolic syndrome, I thought I would share the research that I have found helpful here:

METABOLIC SYNDROME
-- Diagnosis and Management of the Metabolic Syndrome
https://www.ahajournals.org/doi/10.1161/circulationaha.105.169404
-- The metabolic syndrome – What is it and how should it be managed?
https://journals.sagepub.com/doi/full/10.1177/2047487319886404
-- A comprehensive definition for metabolic syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
The videos that got me started:
-- Dr. Jay Wortman - 'Undoing Atkins: A Cautionary Tale' - https://www.youtube.com/watch?v=jIegMp5cWBY
-- Dr Jay Wortman Diabetes Remission is Surprisingly Simple! - https://www.youtube.com/watch?v=Cx6xw3wOAMc

1. There are so many different forms of neuropathy that things said or done by individuals needs to be closely examined before you act on their recommendations.
2. There is a strong bias in PN info. When you examine medical literature from the far east or middle east or Europe the discussions on treatment are often different. Here the focus is on medical/big pharma approaches when neurologists talk of care.
3. I taught statistics, so I can say that medical references to PN are very, very, limited since the designs and stats used to come to conclusions about PN will take decades or at least many years. For example look at the Winsantor clinical trials.
4. Be careful in trying what people recommend since it can make your circumstances worse. Come to some conclusion about the physiological mechanisms at work. The mentors do a GREAT job of pointing people to relevant info.
5. If anyone says they can cure PN or improve PN and they have something to sell it is probably a scam. I've tried too many things when desperate. I also have wished for simple solutions.
6. There is often a dark side to PN. Depression is common among us. It is often hard to look at the positive versus the negative. Often people are saying have a great day etc. They had great upbringings or have resilient brains that were conditioned with good upbringings or wonderful experiences that helped them. I'm very lucky and have had a great life but it is hard to be positive every day!
7. There seem to be some metabolic issues that no one is talking about. For example I've been seen by 5 neurologists and diagnosed over and over. It seems like a financial windfall for many physicians since I get nothing from seeing them. I'm suspicious since I've taught hundreds of doctors.
8. In discussions with many health care providers people do seems to have some common problems that are not discussed. Many PN people have the following: diabetes (if you don't have it you will be treated like you have it almost always), high foot arch, thyroid disease, celiac disease (other common auto immune problems.) Look at what is recommended for these problems and you might find suggestions that work.
9. Do what you can to increase blood flow to your feet and hands. Talk to your neurologist about drugs like cilastizol that can improve blood flow to extremeties. Also look to topicals such as essential oils, castor oil, magnesium, and other products that you can confirm improve blood flow.
10. Exercise. Simply do what you can and find your limitations given your circumstances. There is always something that you can do to improve your blood flow.
11. Check your nutrition and supplements that you could use to assist your circumstances. Again don't rely on individuals who don't have sufficient educational training for changes that you might make. For example supplementing B 6 vitamins could be problematic to your condition.
12. On paper set up your plan. It requires some thoughtful consideration to making a plan. If you don't have a plan that you can examine and modify as you gain experience, well then you are likely to miss things as your condition deteriorates.
I wish you all good health and hope that a few of you can draw from my experiences. I am no expert and do not wish to provide guidance to anyone. Check with the mentors. They are properly trained to help you.

1. There are so many different forms of neuropathy that things said or done by individuals needs to be closely examined before you act on their recommendations.
2. There is a strong bias in PN info. When you examine medical literature from the far east or middle east or Europe the discussions on treatment are often different. Here the focus is on medical/big pharma approaches when neurologists talk of care.
3. I taught statistics, so I can say that medical references to PN are very, very, limited since the designs and stats used to come to conclusions about PN will take decades or at least many years. For example look at the Winsantor clinical trials.
4. Be careful in trying what people recommend since it can make your circumstances worse. Come to some conclusion about the physiological mechanisms at work. The mentors do a GREAT job of pointing people to relevant info.
5. If anyone says they can cure PN or improve PN and they have something to sell it is probably a scam. I've tried too many things when desperate. I also have wished for simple solutions.
6. There is often a dark side to PN. Depression is common among us. It is often hard to look at the positive versus the negative. Often people are saying have a great day etc. They had great upbringings or have resilient brains that were conditioned with good upbringings or wonderful experiences that helped them. I'm very lucky and have had a great life but it is hard to be positive every day!
7. There seem to be some metabolic issues that no one is talking about. For example I've been seen by 5 neurologists and diagnosed over and over. It seems like a financial windfall for many physicians since I get nothing from seeing them. I'm suspicious since I've taught hundreds of doctors.
8. In discussions with many health care providers people do seems to have some common problems that are not discussed. Many PN people have the following: diabetes (if you don't have it you will be treated like you have it almost always), high foot arch, thyroid disease, celiac disease (other common auto immune problems.) Look at what is recommended for these problems and you might find suggestions that work.
9. Do what you can to increase blood flow to your feet and hands. Talk to your neurologist about drugs like cilastizol that can improve blood flow to extremeties. Also look to topicals such as essential oils, castor oil, magnesium, and other products that you can confirm improve blood flow.
10. Exercise. Simply do what you can and find your limitations given your circumstances. There is always something that you can do to improve your blood flow.
11. Check your nutrition and supplements that you could use to assist your circumstances. Again don't rely on individuals who don't have sufficient educational training for changes that you might make. For example supplementing B 6 vitamins could be problematic to your condition.
12. On paper set up your plan. It requires some thoughtful consideration to making a plan. If you don't have a plan that you can examine and modify as you gain experience, well then you are likely to miss things as your condition deteriorates.
I wish you all good health and hope that a few of you can draw from my experiences. I am no expert and do not wish to provide guidance to anyone. Check with the mentors. They are properly trained to help you.

Snagydude,
Thank you for your well-organized thoughts and suggestions. You are certainly right about the medical establishment and Big Pharma. I recently learned that I had celiac disease--an autoimmune condition which may account for my PN. I eliminated all gluten products from my diet as my neurologist, who ordered the blood test, never bothered to discuss the test results or give me further guidance. At the visit, he did tell me that my muscle wasting was due to my "disease." So I tried to build up muscle at physical therapy--where I was given leg lifts with ankle weights. I am now suffering with back pain. I am usually upbeat but this pain has me feeling down.

Snagydude,
Thank you for your well-organized thoughts and suggestions. You are certainly right about the medical establishment and Big Pharma. I recently learned that I had celiac disease--an autoimmune condition which may account for my PN. I eliminated all gluten products from my diet as my neurologist, who ordered the blood test, never bothered to discuss the test results or give me further guidance. At the visit, he did tell me that my muscle wasting was due to my "disease." So I tried to build up muscle at physical therapy--where I was given leg lifts with ankle weights. I am now suffering with back pain. I am usually upbeat but this pain has me feeling down.