Member Neuropathy Journey Stories: What's Yours?

Hi all
This is my story.
I am 75. Up until about 3 years ago, I was (I thought) remarkably healthy for my age. I was skiing, road biking long distances, hiking, etc.
I was having the usual old guy's problems with urination, and eventually decided to have a procedure done. My urologist ordered a CT scan of my belly, and, to his and my surprise, discovered a large tumor (lymphoma) on my small intestines, and numerous other tumors on both kidneys.
Long story short, the lymphoma was resected, turned out to be very slow growing type. I probably had it for years. The kidney tumors were unrelated, and were determined to be something rare (onchocytoma), and not malignant, so they're still in there.
BTW, I finally had the prostate surgery, which went well, except that I was found to also have prostate cancer, but again, the very slow growing type. All these conditions are simply being watched for development
For years, I had been noticing strange feelings in my feet. They felt like they were sweating, but weren't. This started happening when wearing shoes without socks.
Around the same time as my surgery , the feelings in my feet began to get worse, to the point where I couldn't wear any shoes or socks without experiencing severe burning. Finally, I got what was going on, saw neurologists at UCSF, had the million dollar workup, including skin biopsy, and was diagnosed with small fiber neuropathy of unknown cause.
I've tried almost every medication in the book, and can't honestly say that any have helped much. Currently, I'm on 150 mg of Lyrica at night (I tapered down from 450 mg daily, just to see what happens, and honestly, I can't say for sure). I'm also on Cymbalta. I have tried tramadol (doesn't work for me), gabapentin (as expected, same as Lyrica), low dose Naltrexone (who knows) and various supplements, vitamins, acupuncture, gadgets, the entire catastrophe.
Ironically, with all these diagnoses, the only thing that bothers me is the peripheral neuropathy, which has put the kaboom on half my life.
I'm trying my best to live as much of my life as I can. In particular, I am still able to ride fairly long distances on my bike, which I do whenever I can.
What I tell friends who I suspect may have PN is that they should see a neurologist soon. If they're lucky enough to have a treatable cause, the sooner the better. Also, it is helpful to have an expert do the workup. As we know, the disease is complicated and tricky to diagnose and treat. It's also helpful to understand that with these types of diseases, it's not at all unusual for medical providers to sometimes not act as well as we would like. Some even dread seeing patients with these types of chronic pain problems. So, don't take it personally, or allow it to make you angry. That doesn't help.
I had to quit a very satisfying (although part time) job simply because I couldn't wear shoes and socks. I've also had to quit numerous recreational activities, as noted above.
Regarding social interactions, I have less than before. Some of this is because sometimes, I don't feel well enough to go, or the venue will make me uncomfortable. I was a life long serious traveler. but I hardly travel at all now. Also, I have grown tired of having to explain to people what's wrong with me. I look like a healthy 75 y/o man. People's eyes glaze over, and I feel I'm boring them. Ironically, I often feel better in company when I finally participate, probably because I am distracted from the pain. This has led me to trying to learn how to distract myself.
It's mostly our responsibility to find out what helps. It's almost always different for each person. There are ways to feel better. We have to do the work and experiments to find them.
Hope this helps.
Jeff

Hello all, I'm a 70-year-old male and was told by a neurologist in January 2022 that I had neuropathy.
For all of you that started having symptoms of neuropathy in your 40s or 50s I really feel for you. No doubt I'm just at the early stages of neuropathy and it is changing my way of life. I can’t imagine having dealt with this for twenty or thirty years!
My wife tells me that whenever I tell a story I tend to ramble way too much, so I apologize up front if that occurs here.
The reason I went and saw a neurologist in January 2022 is because my cardiologist referred me. I have had heart disease for the last twelve years. A triple bypass in 2011 and four or five stents since.
One of the items my cardiologist tracks from my blood test every six months is my CK (creatine kinase) number. It has something to do with my muscles and it concerns him about the muscles around my heart. The range is supposed to be 100 to 200. A couple of years ago mine went up to 500 and the following 2 tests were over 1000, so the referral.
The neurologist examined me in January and had an EMG done. The results of that test showed Radiculopathy (compression) of the lumbar and cervical regions of the spine. And the analysis also included signs of polyneuropathy.
Probably for a couple of months prior to my neurologist visit I had been feeling tingling in my feet and toes at night, but I mostly ignored it. It wasn’t bothering me at all.
The neurologist then ordered a blood test looking for among other things vitamin deficiencies. Nothing out of the ordinary showed up. She then sent me to another neurologist for a muscle specimen of my leg, since she doesn’t do them.
The other neurologist suggested that the results of the EKG showed I needed an MRI on my lower back, not a muscle specimen. An MRI was performed and the analysis was spinal stenosis of the lumbar. At this point my back was starting to give me trouble. Went to Pain Management and received a spinal epidural.
The epidural provided no relieve and now my back pain included my legs and feet and the pain was getting much worse. So, I had an appointment with a neurosurgeon and in early May 2022 had a laminectomy. Part of my bottom two vertebrates in my spine were removed to take the pressure off of my spinal cord.
This immediately removed the pain in my back and legs, but I still had the feet and toes tingling and now was also having numbness in them.
Prior to the back surgery the first neurologist had ordered a bone scan. She was looking for problems with my bone marrow. I was able to have that done in June. The neurologist said there were abnormal results in the scan, but they were related to orthopedics, not something she was looking for. So, she has referred me to an orthoepic. I see him next week.
The neurologist had given me a sheet of information about neuropathy back in January. I saved it but hadn’t read it, until August 2022. She had told me there is no cure, but I was looking for some relieve from my numbness.
Under the heading “Symptom Management” was a list of five different topical creams or patches. I started trying them out. Asper cream, Voltaren, and Capsaicin creams. Short term relief was about all they provided.
Next, I called the neurologist and received a prescription for Gabapentin. Did not like how I felt taking it at all, so I stopped.
My next choice of pain management was marijuana cream. It seems to help better than any of the other creams, but certainly doesn’t eliminate all the tingling and numbness and it seems to last just a few hours. I believe there are different types of marijuana creams, so may try some others.
It was time to go visit Dr. Google. Somehow very early in my research I found this website. I have just begun to read all the information provided here and the links to other informative websites.
A great big THANK YOU to all the Volunteer Mentors who work this website! You are providing a wonderful and needed service to all who don’t know where to turn for info.
Where I am at now is I noticed that R-Alpha Lipoic Acid was mentioned many times on this site so I started taking 900mg a day about a week ago. I continue to use the marijuana cream usually twice a day. And I ride a stationary bike and lift some dumbbells daily. I read about the Protocol, but because of the cost will search other relief now.
I used to walk 2 or 3 miles every day, but can’t now. Numbness occurs in my feet after about a half mile or so. So everyday life is about the same for me except long distance walking. And also balance problems. I’m just praying I can keep it at this level!
My question now is where to turn with the medical field. One thing I haven’t mentioned is I am a Type II diabetic. I take a couple of prescription pills for it, and watch my diet. My blood tests are always good.
I think I have been labeled as a diabetic neuropathy. Is an EMG, blood test and bone scan all that can be tested? Should I seek a doctor who will investigate further my type of neuropathy, or will offer other types of treatment? Looking for suggestions.
Thank you so much for your time in reading this and may blessing be sent to you all!
Vic

@johnbishop
Thank you for your reply. I will certainly check out those sites and youtube videos.
I have Type II diabetes. I take 2 prescriptions and watch my diet and have not had any problems.
So I'm not sure it that would be a likely cause of neuropathy.
Vic

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?

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.

I am having trouble sleeping. I am interested in what kind of Magnesium you take and what dosage.?

Thanks