Member Neuropathy Journey Stories: What's Yours?

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?

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.

Before I found the Facebook group which started the Protocol 525, I was researching supplement that may help and was only taking Alpha Lipoic Acid and fish oil for the Omega 3 fatty acids but learned they are just pieces of the puzzle. I learned the "cheap" Alpha Lipoic Acid I was buying wasn't doing much for me since it was 50% S-ALA ( chemically produced in the manufacture of R-ALA and has less, if any nutritional value) so I switched to the higher quality 100% R-ALA. It was about that time in 2016 when I found the protocol which had the quality R-ALA as well as the fish oil as part of the list of supplements.

If you need a place to start, the Foundation for Peripheral Neuropathy has a list of supplements Most of these same supplements are part of the current Protocol 525.
-- https://www.foundationforpn.org/wp-content/uploads/2016/10/Supplements-Not-highlighted.pdf

First, I am so happy to have found this forum of other people that are suffering with this horrible affliction called PN.

On January 2, 1994 on a flight home to southern California, my legs felt very cold. I remember going home and running them under warm water, then driving to the beach to put them in warm sand. The pain did not abate, so I was referred to neurology. The first neurologist said that I was stressed, and that he would "not subject his own son to the invasive tests that would be required". I sought a second opinion, and this doctor believed me. He drew seemingly half the blood out of my body and did a spinal tap. I remember the nurse coming in and I was crying. She asked if I was afraid of the spinal tap. I told her I was not, but was crying out of fear of what the spinal tap might find. What it did find was elevated spinal fluid protein and one oligoclonal band (which I don't know to this day is of any significance). I have since been confirmed with SFN via punch biopsy.

Eight months after onset, I enrolled in an elite business school and somehow made it through. But it took its toll. Few friendships and erratic behavior - gambling, excessive drinking, etc. After graduation, the girl I thought I would marry left me one day because of the way I was treating her and acting. I was 24 when I was diagnosed - a kid still in some respects. And I didn't know how to accept or understand my new reality or what was happening to my body. Suicidal thoughts were a daily part of my life. I remember going to a gun store and holding a 357 Magnum in my hand and considering buying it to end my mental and physical pain.

Since then, I pulled myself together and married a wonderful woman who loves me and supports me unconditionally. We have three beautiful teenage sons. But three weeks after I got the second Pfizer dose early in 2021, my legs starting burning and fasciculating unlike ever before. And it has continued essentially unabated for 11 months now. I cannot be certain, of course, that it was the vaccine, but I believe that it was. And FYI, I am not an anti-vaxxer. My entire family is vaccinated. I'm seeking the truth.

Too make matters worse, recently my 17-year-old son got the same fasciculations that were the very first symptom I noticed even before the burning started on that flight. He has headaches, GI problems, and his leg feel asleep recently for no reason. For a week I just couldn't stop crying. One day during lunch I got in the back seat of my car and just wailed for him to not have this disease - this thief that robs people of careers, a carefree life, relationships, dreams and more. I can somehow get through this, but if my son has it too, I'm just not sure how I will make it. As it stands, my pain has flared up of late worse that ever before. I'm just not sure how I can keep working and be productive given the pain that I am in. It is mentally exhausting and the trauma from long ago never goes away. It lies there just below the surface waiting for something like I am going through now so that it can resurface again. It's so visceral that sometimes I feel like I'm back there again.

I am trying my best to keep a positive attitude, but I'll be honest: there is a part of me that is outraged that the first-line medication (i.e. gabapentin) is the same medication being prescribed since 1993, nearly 30 years ago. Pardon my French, but how the hell can that be??? This group of people of which we are a part are suffering immensely in silence, and there are so very many of us, with so little funding on a relative basis going to research. I personally find that offensive and outrageous. They created a COVID vaccine in 9 months, yet we don't have a single new drug to give us hope, to hang our hat on, in 30 years? Honestly, what advances can be pointed to that would give me reasonable reason to have hope?

I very much appreciate you reading my (long) story and I sincerely wish each of you my best on your journey.

JayB

Hello all I am suffering horribly I have had a total of 6 back surgeries 5 lumbar lower lumbar fusion and most recently cervical neck fusion. I am now much worse after cervical fusion. I cannot sleep more than 3 to 4 hours and then awake from the pain in my shoulders neck arms hands and fingers excruciating pain… It is constant 10 24/7… I have tried opiate's and Baclofen and Lyrica…just got a Boston Scientific stimulator in my cervical region yesterday… I was hopeful but woke in same horrible pain again after 5 hours rest…had to reach for my Percocet immediately and Baclofen… Doctor seems to think I have CRPS and Carpel tunnel and ulnar nerve damage as well. Nothing is helping except the pin meds provide some relief. But he wants me off the pain meds and has tried twice unsuccessfully…. Feeling very frustrated and hopeless…Please HELP…

First, I am so happy to have found this forum of other people that are suffering with this horrible affliction called PN.

On January 2, 1994 on a flight home to southern California, my legs felt very cold. I remember going home and running them under warm water, then driving to the beach to put them in warm sand. The pain did not abate, so I was referred to neurology. The first neurologist said that I was stressed, and that he would "not subject his own son to the invasive tests that would be required". I sought a second opinion, and this doctor believed me. He drew seemingly half the blood out of my body and did a spinal tap. I remember the nurse coming in and I was crying. She asked if I was afraid of the spinal tap. I told her I was not, but was crying out of fear of what the spinal tap might find. What it did find was elevated spinal fluid protein and one oligoclonal band (which I don't know to this day is of any significance). I have since been confirmed with SFN via punch biopsy.

Eight months after onset, I enrolled in an elite business school and somehow made it through. But it took its toll. Few friendships and erratic behavior - gambling, excessive drinking, etc. After graduation, the girl I thought I would marry left me one day because of the way I was treating her and acting. I was 24 when I was diagnosed - a kid still in some respects. And I didn't know how to accept or understand my new reality or what was happening to my body. Suicidal thoughts were a daily part of my life. I remember going to a gun store and holding a 357 Magnum in my hand and considering buying it to end my mental and physical pain.

Since then, I pulled myself together and married a wonderful woman who loves me and supports me unconditionally. We have three beautiful teenage sons. But three weeks after I got the second Pfizer dose early in 2021, my legs starting burning and fasciculating unlike ever before. And it has continued essentially unabated for 11 months now. I cannot be certain, of course, that it was the vaccine, but I believe that it was. And FYI, I am not an anti-vaxxer. My entire family is vaccinated. I'm seeking the truth.

Too make matters worse, recently my 17-year-old son got the same fasciculations that were the very first symptom I noticed even before the burning started on that flight. He has headaches, GI problems, and his leg feel asleep recently for no reason. For a week I just couldn't stop crying. One day during lunch I got in the back seat of my car and just wailed for him to not have this disease - this thief that robs people of careers, a carefree life, relationships, dreams and more. I can somehow get through this, but if my son has it too, I'm just not sure how I will make it. As it stands, my pain has flared up of late worse that ever before. I'm just not sure how I can keep working and be productive given the pain that I am in. It is mentally exhausting and the trauma from long ago never goes away. It lies there just below the surface waiting for something like I am going through now so that it can resurface again. It's so visceral that sometimes I feel like I'm back there again.

I am trying my best to keep a positive attitude, but I'll be honest: there is a part of me that is outraged that the first-line medication (i.e. gabapentin) is the same medication being prescribed since 1993, nearly 30 years ago. Pardon my French, but how the hell can that be??? This group of people of which we are a part are suffering immensely in silence, and there are so very many of us, with so little funding on a relative basis going to research. I personally find that offensive and outrageous. They created a COVID vaccine in 9 months, yet we don't have a single new drug to give us hope, to hang our hat on, in 30 years? Honestly, what advances can be pointed to that would give me reasonable reason to have hope?

I very much appreciate you reading my (long) story and I sincerely wish each of you my best on your journey.

JayB

Dear Jay, I can write a novel to you with the most heartfelt sympathy (truly), Please get in touch with Senator Ron Johnson. Sen. Johnson is an advocate for Vaccine injury victims, and he would be a good resource for you. Open VAERS (Vaccine Adverse Events Reporting) also valuable information. You must search with the word OPEN or you will be directed to CDC's vaers. Find a compounding pharmacy and ask for referrals of doctors that prescribe through their COMPOUNDING pharmacy and then you will find care for your family and for your PN. In my efforts to avoid pharmaceuticals, I turned to an OTC FDA approved sleep aide (Benadryl) and have PN myself. Many victims because of Prolia, high blood pressure meds (scare tissue in the throat), so many FDA approved medications that have preyed on the American public as lab experiments....the list is long.