Member Neuropathy Journey Stories: What's Yours?

Hi, read your story with interest. I had a spike I'm my glucose in December of 2022, and I got sensory Neuropathy. Like you my problem is mostly numbness in both feet which is getting worse weekly. Don't know when it will stop. I heard about protocol 525 and I have ordered it. Hope it helps me stop or reverse the progression. I am currently on a program from the Neuropathy Center in San Antonio, Texas. I use a laser boot 2 times a day and 3 different supplements daily. It's been about 2 months but no results yet. I know nerves take a long time to heal so I am sticking to it. If u r interested I can give u there number. Are you still able to drive?Any advice u can offer would certainly b appreciated. Oh, I am 81.

Hi, read your story with interest. I had a spike I'm my glucose in December of 2022, and I got sensory Neuropathy. Like you my problem is mostly numbness in both feet which is getting worse weekly. Don't know when it will stop. I heard about protocol 525 and I have ordered it. Hope it helps me stop or reverse the progression. I am currently on a program from the Neuropathy Center in San Antonio, Texas. I use a laser boot 2 times a day and 3 different supplements daily. It's been about 2 months but no results yet. I know nerves take a long time to heal so I am sticking to it. If u r interested I can give u there number. Are you still able to drive?Any advice u can offer would certainly b appreciated. Oh, I am 81.

Hi Fred, I"m Sean . I'm just now 83 and living with this since two years ago. Idiopoathic since not diabetic or chemo-related. Mine was caused, I'm sure, by subdural hematoma in 2016. I take only supplements. No pain, just numbness in feet and lower legs, tingling and anything new I attribute automatically to neuropathy! Sudden bladder urge, worsening handwriting, anxiety, depression. I find exercise is key, so walk daily and swim several times/week. I find mushroom caps help greatly : lions mane, reishi and cordyceps. Also meditation daily, and stretching. Attitude is vital: I imagine how much worse it could be, like wheelchair or walker and I push forward. We're living longer than our biological history so something had to change and apparently this is what we get! Eventually everyone in the western world will get this; it's a matter of time. Simpler, calmer societies will be spared but probably live shorter life spans. I'll give you my number if you wish to message or call to compare notes.

I wonder if anyone in this thread has tried to reduce symptoms thru a major change in diet? Such as avoiding sugar, processed foods and basic common carbs like white rice and white bread. I have been told that some people have had some degree of success through avoidance of sugar (but I wonder if artificial sweeteners are just as bad.)

I started my journey with neuropathy when I was in my early 50s, with some numbness that started in my toes on both feet. I mostly ignored it because there was no pain and I really didn’t think much about it. After a few years, the numbness progressed to the bottoms of both feet and I mentioned it to my primary care doctor who said it could be nerve damage. He said they could run some tests and determine if it was nerve damage. I asked if they determine if it is nerve damage what can be done. I was surprised when he mentioned there was not any treatment that will help with numbness.

The numbness gradually increased over the years and in my early 70s the numbness had progressed to just below my knees. It was at this point that I was worried about my mobility and what the future would hold so I talked with my primary care doctor who helped me get an appointment with a neurologist. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20 years ago.

After I received my diagnosis of small fiber PN I was trying every topical cream available that said it would help neuropathy with zero results. Then I found a book by Dr. Terry Wahls, The Wahls Protocol. She shared how using functional medicine and nutrient rich foods helped her treat her symptoms of multiple sclerosis and get her life back. This started my journey on looking at nutrition as a possible treatment for my neuropathy.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it is up to you to do your own research and avoid scams. Fortunately, there is a lot of information on how to avoid scams but it is out of sight, out of mind for a lot of folks. Here are the ones I have used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page:
-- https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it:
-- https://nccih.nih.gov/health/decisions

That said, I have found a protocol of supplements developed by fellow neuropathy patients that works for me and has helped others with PN get off the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was high.

You can read more about it in this discussion:

Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I have not made any more progress, but I am OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Recently I have seen some feeling return to my feet at different times during the day which gives me some hope of more progress and a new normal.

I’ve been a member of Mayo Clinic Connect since 2016. And it gives me great comfort to talk with others, share ideas and information, not only here in the Neuropathy group, but also in other groups as new health questions come up, like managing PMR, getting a knee replacement, a CPAP, etc. Ahh, the joys of aging. Hey, if you qualify ;-), you might also want to join me in this group on Connect: Aging Well. (See all 70+ Groups on Mayo Clinic Connect here: https://connect.mayoclinic.org/groups/)

What’s your neuropathy story?

While "The Protocol" supplement formulation that you discuss has some ingredients that may be beneficial in some forms of neuropathy in some people, I object to the way it is marketed and consider it unscientific and something of a rip off. At the Protocol website its creator has a list of questions and answers, one of which asks if an ingredient can be eliminated. And the answer provided is: "In a word, NO. The Protocol IS." The Oracle has spoken and has, in effect, declared that this particular formulation has been irrefutably validated and simply now IS fact, not to be questioned. The truth is there is no such validation, not even a single credible study to support this formulation. I also strongly object to the creator of this product advising sufferers of peripheral neuropathy to ignore the advice of medical doctors who run tests and find that levels of certain micronutrients are too high; as the medical advice in question here went contrary to the absolute Protocol, the manufacturer of it advised the patient to consult a naturopath or other non-M.D. medical adviser. Do that at your own peril. Finally, you can do far better simply buying individual supplements rather than spend the roughly $180 per month for this highly questionable product, which, additionally, lacks any credible third party testing for truth in labeling, impurities, etc. I strongly advise all who use supplements of any kind to check with a reliable third-party tester of products, such as ConsumerLab before buying ANY nutritional supplement. Some of them can be highly hazardous to your health, and others are grossly mislabeled and fraudulent.

Hello @proteusx, Welcome to Connect. Nobody is marketing the protocol on Connect and you are entitled to your opinion. I shared my experience and was asking for experiences of other members who may have tried it. I'm glad that you do your own research. I've been taking this protocol since 2016 and discussed the supplements with my doctor when we ordered each individual item from the manufacturers website or Amazon, which ever we could find the best and least expensive. The past few years the protocol has changed due to research by the person who started the protocol and we did group funding to work with a local small pharmaceutical company to combine supplements that could be easily combined without degrading the bioavailability of the vitamin/supplement. The group is now working to make the next version into a liquid form to make it easier to take than the capsules.

They did put together a Why the Protocol? document that has links to the science research behind why each of the supplements are in the protocol.

Are you able to share a little more about your diagnosis and what has helped?

Hi John, I have been looking into possible connections between peripheral neuropathy and some other conditions that might suggest some additional approaches to treatment that have mostly, so far, flown under the radar. If I can obtain some meaningful benefit from this, applicable in my own case, I’ll be happy to share it. May know a lot more in a few months. David