Member Neuropathy Journey Stories: What's Yours?

Thank you, John, for your kind comments and helpful info. I’ll check out the link. I read your story and found it really interesting. Have you shared your list of vitamins on here somewhere already?

My understanding of scrambler compared to SCENAR is that the latter is “light years” beyond technology wise! Rather than 10s or maybe 100s (not sure?) of combinations scrambler uses, it’s millions, the brain can’t learn and get used to them. I can’t recall if I said, but I pay $60 per session. He’s raised it to $80 but not for me as I was one of his first regulars 🙂

It’s fantastic that your neuropathy receded ( if that’s the right word). Feet seem often to be the worst! Thanks again for reading my story and sharing.

I take the supplements from here - https://theprotocolworks.com/faq/. They have the ingredients listed under the frequently asked questions. I posted the why the protocol document in another discussion along with the research links for each of the ingredients here - https://connect.mayoclinic.org/comment/957496/. It may or may not work for everyone but I do feel like it has helped slow the progression of my neuropathy. Most if not all of the supplements are listed on the Foundation for Peripheral Neuropathy site in their complementary and alternative treatments but they don't spell out the amounts for doses. You can order the individual supplements from other sources if you can find reliable ones. Here's the list on the Foundation for PN site - https://www.foundationforpn.org/wp-content/uploads/2024/11/Complementary-and-Alternative-Treatments.pdf

I had numbness in my feet and when diagnosed with type 2 diabetes I choose to go on a ketogenic diet. After reading up on alpha-lipoic acid I decided to also take that. After 6 months dropping my A1C to under 5 and losing 70lbs I noticed while walking across the floor in just socks I felt the different parts of my feet making contact. Oh boy what a shock and wonderful surprise. After over 2 years my toes were still numb. I did some more research and decided to try adding acetyl-l-carnitine. After less than a month I felt each of my toes on the floor. So far after maintaining my diet and supplements all I have is a little tingling. This is my experience and I can't comment or suggest to anyone but it worked for me. I believe diet was a key factor by reducing inflammation. I could go on about other improvements but that's off topic. Have a nice day 😊

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.

Hi @mpaf, Welcome to Connect. I'm glad to hear that you don't also have pain with the numbness as there aren't any medications that can help the numbness. I think eating healthy and eliminating processed foods and sugar as much as possible can help. I also think that learning as much as you can about the condition, possible causes and treatments is a big plus in the neuropathy journey. A good place to start if you haven't already seen it is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

It hasn't really helped with the numbness in my feet but I often use LifeFlo magnesium lotion to keep the skin hydrated on my legs and feet. It does make them feel better but the numbness is still there. There is a discussion started by @dbeshears1 that you might find helpful - Topical Magnesium Lotion for Feet: https://connect.mayoclinic.org/discussion/topical-magnesium-lotion-for-feet/.

There are some medications that can cause neuropathy type symptoms. Are you on any statins or other medications?

Hi,
I'm not sure when my journey started but now am remembering all the incidents I have experienced in the past and wonder what was or what was not neuropathy related. I have T2 diabetes which was diagnosed 13 years ago although I recognised symptoms much earlier in life and ignored them since the 70's. I didn't heed Dr's advice regarding my high BP, Cholesterol for all those years, I was bullet proof! Now the chooks have come back to roost since suffering a serious bout of Champylobater 13 years ago. Suddenly I'm disgusted with previous Dr's advice that my glucoes levels are OK despite being above the max recommended after starvation. It is likely that unchecked T2, cholesterol levels and high BP have played their part since the 70's.
I have had pins and needles in the feet and hands for some years off and on, periodically areas on my skin that become super sensitive to touch for several days at a time and sleep deprevation all my life. Campylobacter has been the nail in the coffin and the ah ha moment. I have been diagnosed with Meniere's disease, IBS, CKD 3B, T2 diabetes now on insulin, enlarged heart, Autonomic polyneuropathy which is all the nerves compromised, CSVD and low Sella level, High BP untreatable because I have become intolerant of most medications and the ANS is playing with it constantly changing it at a moments notice, never for the good. My digestive system is completely compromised from mouth to the other end as a result of the Autonomic polyneuropathy and regularly slip into a state of SIBO because of it. My diet is now severely restricted to a small volume of food or drink and also limited what I can eat or drink. Starvation is the likely outcome as a result. I have been noticing the feet and hands are becomming more affected with neuropathy with the loss of sensation in the feet but still able to sense I'm standing on something, what I couldn't tell you without looking. I recently dropped a stack of flooring boards on my left foot, that I did feel! Years ago I had a moment when I was paralysed and unable to move for several minutes at the same time I was diagnosed with repetative strain injury to both arms and hands. I was unable to tell the difference between a needle prick and a touch of a pen on both arms. Now I'm wondering if this was indeed the early stage of neuropathy. Regularly my hands feel like they have been waxed and the sensation disapears. I had 15 mini strokes last year, was unable to walk unaided and one moment being paralysed from the waist down unable to persuade anything to move or work for several minutes, glued to the spot mid stride. I'm now back walking and talking causing even more trouble! I get bouts of brain fog, unable to understand written or spoken words, clumby legs and odd moments of staring into space not aware of anything around me. My left leg misses steps but the brain has figured out how to react quickly and catch myself before kissing the ground, as I used to. I'm getting better at work arounds and life continues while it can. I manage to cope well with Tinitus and vertigo although the vertigo caused a 3 meter fall fracturing the calcanus.
I have been noticeing the lack of feeling in the feet slowly move up to my knees and most notable the left leg is more affected then the right.
This year has been the culmination of all manner of tests etc, etc and I'm now on my own having to manage my health issues as best I can. Ultimately being confirmed that there is nothing that can be done for the neuropathies I have. I'm able to soak up most of the pain I experience having a very high pain tolerance, built up from years of putting up with ripped shoulder tendons. Finally got one almost fixed late last year with keyhole surgery, woke from the operation and immediately checked out without painkillers, never felt a moment of pain, such is my tolerance level.
With no medical cure or treatment on the horizon for the autonomic polyneuropathy there is only death as a cure. I just get on with my life ignoring what I can and putting up with the rest as long as I can. The prognosis isn't brilliant but as I'm living each day as it comes tomorrow really doesn't matter until it gets here, then I will deal with it as I see fit. Ultimately we all die anyway, I may sooner than expected. I have discarded a lot of my medication and strangely feel better for it, with a death sentance hanging over me it really doesn't matter which ailment gets me in the end. My attitude has changed through the ordeals from self pitty to being possitive, it will not stop me doing what I want. Sure that brings alot of added pain and problems for the following days but sucking it up and waiting it out I'm able to get back to thrashing this body yet again. I find the harder I work the less these diseases pray on my mind and the less I wollow in self pitty. How do I cope, I have to, the altenative is not one I wish to take, yet!
Cheers

Hi John, I replied yesterday, but not sure it made it thru - so, firstly, thanks for your thoughts/input. Actually I have been taking statins for a number of years, so I will check this out with my GP. Matthew

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?

Mine started in 2011 with a sudden onset of nerve pain and tingling and vibrating in my hands and feet. At night, I was in the fetal position with pain. I was misdiagnosed over and over until I had Guillain Barre in 2015, and the symptoms worsened. Even though my EMGs, nerve conduction studies, and SFN biopsies are normal, my doctor diagnosed me with SFN and motor and autonomic neuropathies based on symptoms, clinical observations, and medical history. I have a new neurologist trying to figure out why I have it.

— What treatments or medications have you tried?
All of the standard medications. None worked, plus Cymbalta, Lyrica, and Gabapentin gave me horrendous side effects.

— What side effects have you had, if any?
I don't remember all of the side effects of all the meds; it was years ago. On my first day on Cymbalta, my heart raced, and my head pounded so bad I panicked and ran into a plate glass window and got a concussion. On Lyrica, my behavior became so erratic that I dropped a plate of food on a friend's tile floor during a holiday party, and when the plate broke, and the food made a horrible mess, I just laughed and walked away. Gabapentin affected my cognition so much that I couldn't function and felt like a walking zombie. My symptoms now cover more than a page single-spaced, and I manage primarily with diet, moderate exercise (I just started using resistant weight training again), supplements, herbs, cannabis, oxycodone from time to time, and 100mg of gabapentin at night.

— What would you tell your best friend if they told you they had neuropathy?
Find a neurologist specializing in neuromuscular disorders, and don't give up trying to figure things out. Eliminate the foods that aggravate nerves, have your nutrient levels tested for what can affect neuropathy, take supporting supplements, and supplement with the herbs that support your nervous system. Keep moving!

— What activities have you had to give up because of neuropathy? What do you instead?
I gave up alpine skiing, my work as a ski patroller, backpacking, rowing whitewater, long hikes, everything outdoors that I love, yoga, dancing, and working out. I now work from home, write, create random art, read, garden, grow my food (slowly), grow medicinal herbs, and make tinctures. I am currently writing and illustrating my first children's book based on the adventures of my emotional support adventure cat.

— How has your life changed socially? at work? at home?
I have many commorbidities and am disabled from chronic migraine. I don't make big social plans anymore. I have a handful of good friends who understand and accommodate my conditions, my kids, and a new grandson! I work from home independently, but it's not enough. Even with SSDI and self-employment, I am going into debt.

I have idiopathic Peripheral Neuropathy. It started about 2 years ago, pain on bottomes of feet. Within 8 months it went up both legs to groin area. Gabapenton didn't work, Cymbalta and Lyrica both made me suicidal within days. Epidural steroid injection was of no help. I live in a small community with limited pain Dr's. None if which will prescribe anything narcotic. My Primary did, but is now retired. ANY ideas for help with this horribly painful condition would be so helpful. I'm on SS disability, 62 yrs old and have no quality of life whatsoever. At my wits end and getting depressed.

I've tried bio freeze on my feet and legs it seems to help me .
I've only known for almost a year but this really is nerve racking but we gotta keep on.i try walking out side it's only in my feet and legs but causes unbalanced walking as well. I'm 59