← Return to My lessons learned about idopathic non-diabetic peripheral neuropathy

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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.

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Replies to "1. There are so many different forms of neuropathy that things said or done by individuals..."

Thank you very much for this information. I have FM and have been told that is the reason for my neuropathy. I've also been told all of us get it as we age and others ignore it. I am not diabetic and have not had my thyroid checked. I have had many other test including a brain mri which showed ms a d tia markers.

Thankyou for your thoughtful post.
The point about blood flow and exercise is well made.
I have a degree of varicose veining, so no problem with blood flowing to the legs but problems with getting it back up again!
Cilastizol comes with a lot of potentially nasty side-effects so even if my doctor would prescribe it, I'm not sure I'd want to take it. As you say, there is that risk of making things worse.
Today I have been on a woodwork project in my garage, too much standing, and my legs are telling me I need to do some stretching exercises. At least that doesn't come with side effects.

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.

Thank you so much for this thoughtful and well organized post.
With respect, I'd like to comment on 2 of your points.
7. I doubt that many neurologists are making a fortune off people with PN. They do not profit from tests, imaging studies, etc. Furthermore, since PN is one of those diseases that is poorly understood and even harder to treat, patients with it may cause a bit of an aversion reaction. Physicians (believe it or not) are humans too. It is not helpful to the patient or physician for a patient to be angry or disillusioned. Unfortunately for all of us, this is a tough situation.
9. While theoretically promising, cilastizol has not yet proved efficacious for idiopathic or diabetic PN.