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Member Neuropathy Journey Stories: What's Yours?
Neuropathy | Last Active: Feb 26 1:01pm | Replies (605)Comment receiving replies
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?
Replies to "I started my journey with neuropathy when I was in my early 50s, with some numbness..."
I just read your story and that is quite a journey...it seems you found a protocol that is helping you after much research & trial & error....
. this is heartening and I do know what you mean about scammers
if I go to a website looking into Hashimoto's there's a group of people that reach out to to sell their products & bundles and I think that's a scam. also I think it's a form of extortion ... however there are genuine protocols as you say that are quite helpful I'm happy to hear about Wahl protocol
fortunately I am am a nutritionit & herbalist so I have always been conscious of a healthy lifestyle & diet.
however on this journey I have had to eliminate many things from my diet during these flareups of hives in order to not exacerbate them ...in other words what works for us normally may not work for us when we are dealing with our ailments.... in fact
there are a plethora of supplements and homeopathic's that won't deal with the issues I am having so
I had to go clinical... I Collett complementary medicine the best of both
for instants in my case diet vitamins and homeopathic's will not effectively deal with my condition as a treatment to get rid of the condition however they do support my overall health and well-being
so I think for each of us it's a balancing act once we find what works for us and what works for us may not work for someone else.
however it is good to read about other peoples journeys & suggestions and to share ours with them
I'm impressed with your journey towards Wellness & The fact that you were able to get some feeling back in the legs. wishing you wellness
John, I may have read your post but I’m at the point where I’m willing to try the magnesium. I am always afraid to take anything as I have allergic reactions to so many things: prescribed or over the counter doesn’t matter. I took my first magnesium pill last night and slept without waking for six hours. I’m usually up every two hours. That alone was improvement for me.
I’m 76 and my neuropathy started in 2005 with a badly diagnosed and I’ll treated case of shingles in my left leg which left permanent nerve damage which they told me would eventually go to my right leg which it has. I’m also dealing with a bone on bone. Left knee (just had gel shots which help a bit) and a bad experience with total right knee replacement. After surgery, I couldn’t move my leg at all for three days. When I wiggled my toes, they immediately sent me to rehab in the middle of the night. No one wanted to be blamed for anything. The surgeon immediately retired and I received ver little help. The neuropathy in my right leg is worse since the surgery. My feet don’t always lift the way they should and I trip a lot. Balance is off. New knee doc is sending me to a new neurologist. Appointment in late November. I just quit my part time job due to extreme stress and I find myself sitting around munching and gaining weight which is the last thing I need. I know I’m a bit depressed but I’m trying to do what my mother always said, “snap out of it.” I’m hoping I will take my second magnesium pill today and not chicken out. I do take gabapentin and duloxitine for numbness and pain.
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.
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.
I have very bad neuropathy in hands and both feet, been on Gabapentin last 2 months, I don't feel any better, been messaging and that is temp. Relief, I wish there was real help for this problem, chemotherapy and surgery is done, have another surgery coming up in few months. Any help please??
I have had small fiber neuropathy for over 40 years now. Still functioning normally, but I have a lot of numbness everywhere. I get muscle cramps a lot in the evenings. But now I have very bad tremors. It started slowly and now my tremors are very bad. Hard to right something on paper or use my hands. I have not heard of this symptom for small fiber neuropathy yet. Can anyone help me with this?
My neurologist could determine what type of np I have and could only offer gabapentine which I have learned makes things worse. I found doc t ors who use red light therapy, a tens device that works with my feet in water, an ultrasound device, and a shock treatment with hot and cold water, fruit powder supplement and another with b complex. Feel like I am walking on pillows but it is not progressing over 10 months. I'm 78 and active. Thanks for your comments. Lou
@johnbishop I have always been pretty healthy, not getting sick much at all. I was diagnosed with cancer in 2012 and finished up my chemo and radiation in 2013. After about 6 months I noticed my left hand would go numb while I was driving and the left side of my upper thigh to my knee was numb. I went to a neurologist and she tested and said I had nerve damage but referred me back to my radiologist for medication. I took Gabapentin for 2 years but it didn't do anything to help me. In 2015 I went in for a small surgery on my right thumb and found out I had a left bundle branch block but no symptoms. The doctors said it was from my chemotherapy. My heart was only working about 25 percent. I had to have a pacemaker/defibrator. Now my numbness was on the bottom of my left foot. I felt like I was on walking on cotton balls. In 2019 I had a Pet Scan and they found a kidney stone lodged in the lower kidney at the opening of the bladder. They had to go in an get it instead of just busting it up. Tests showed my right kidney was doing almost nothing. Now my numbness was in the bottom of both feet and the last three toes on both feet. Usually I was just numb and didn't think much about it just tried to watch myself. One night I jumped out of bed and I felt like I was on fire in my upper left thigh. It shocked me how it hurt so bad I couldn't even touch it. Now it is tingling every day and working its way up my legs. I am 76. It has been a life changer for me. Can't run, get down on the floor to play with the grandkids and walk with a cane because it has affected my balance. I bought some reflexology shoes and they stop the numbness from going up my legs. I wear them 30 minutes every day or more. I am trying to walk everyday but can't walk as fast as I'd like. How long did it take to get some relief from numbness with the pills you are taking>
Hi, I am in my mid 60's and the past year have had numbness progressing on the bottom of my feet. I have not had any pain associated with the numbness. I am starting to have a little bit of trouble feeling the brake and accelerator in my car. I went to a neurologist and they did a nerve conduction test, which was normal. So, at this stage I do not have a diagnosis. It sounds like changing my diet is worth trying. Are there any topical creams which have been effective? Any input greatly appreciated.
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For someone with long-standing peripheral neuropathy (numbness, no pain), and just thinking about starting a supplement, with which of the Protocol 525 should I begin? Thanks.