Member Neuropathy Journey Stories: What's Yours?

Hello @jan64. I'm sorry you're experiencing neuropathy symptoms and all that comes with. It is quite a learning curve to adapt to change or loss of function or abilities. I definitely feel your words and have compassion for you.

Indeed, it was 4 years ago (wow, already) October 26th, that I entered the pain rehab center at Mayo Clinic. PRC was one of the best experiences of my life. The program teaches a person as a whole and equips them strategies and a plan to move forward with chronic issues they have through physical, emotional, behavioral, and chemical coaching and therapies.

I was diagnosed with central sensitization which is a central nervous system syndrome causing chronic pain and or heightened sensory dysfunction. During the time neuropathy was kicking my butt, I was focused strictly on that not quite understanding there was a bigger picture. For that matter the PRC program was exactly what I needed to make the most out of how life had changed and how to find positivity and adaptation moving forward to focus on what I could do versus what I couldn't.

It appears you're on the right track and having the proper testing. I wish you good luck with the skin punch biopsy results and completely understand the perplexity of emotions and not knowing if you hope for positive or negative results. My opinion of that is to learn and understand as much as you can about your condition, be your best advocate and make sure you clearly understand from your doctors what your body is dealing with so that you can move forward with a plan. Will you report back on your results?

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?

@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>