Many neuropathy issues, so why so few doctors who know?

@pauldandurand Hi, I don't have pain when placing weight on my foot. To date, I've seen all sorts of doctors besides my orthopedic surgeon - physiatrist, neurologist, neurosurgeon, podiatrist, naturopath, and physical therapist. Earlier I mentioned the supplements I'm taking and the various therapies. My walk / stride seems better (again, I'm 6 months post-op), but I still have the numbness. Let me know if you find anything or anyone that works.

Acupuncture has helped me. I’m in Colorado and we have a clinic in the cancer center with quite a few very good doctors. I notice it when I stop more significantly than any immediate benefits and it keeps me going back. It’s helped with my hands and feet the most, I also believe the lions mane mushroom supplements I use are working synergistically with the treatments.

Acupuncture has helped me. I’m in Colorado and we have a clinic in the cancer center with quite a few very good doctors. I notice it when I stop more significantly than any immediate benefits and it keeps me going back. It’s helped with my hands and feet the most, I also believe the lions mane mushroom supplements I use are working synergistically with the treatments.

@ccchang
Hello,
Sounds like you are doing the best you can. I too have been taking B-12 supplements for a year and half along with vitamin D. It's great that your walk and stride is improving. That's a great sign. I can't make suggestions for you, but for myself I'm going to work more on physical therapy exercises and go to the gym every day Mon through Fri. I do light weights M,W,F and do stairclimber and stationary cycling Tue/Thur. Nothing heavy. But, I think the consistency and optimism matter.

I have a program I do at home. It's a mix of short exercises and foot stimulation I obtained from different sources. I'll share it with you here:

For each of these I count up to 20 or 30. All of this is barefoot.

- Ball rolls under foot. It's a plastic baseball-sized ball with dimples on it for the foot massage.
- Toe taps.
- Ankle windshield wiper foot swings and rotations. (Both feet at the same time.)
- Cross-leg over the knee and twirl the ankle.
- Hamstring stretch. I do this lightly and carefully because it can easily cause my foot to tingle which means the nerve is being overly aggravated.
- Stand and bend one knee so foot is kicked behind, hold there, and pump the ankle. Then switch for other leg.
- Same as the last one but pump only once and go back and forth kicking behind between legs.
- Stand and do toe raise to strengthen the calves and then do the opposite where you lift your front foot balancing on your heals. I do all of this on a half-inch foam pad to make it bearable.
- Marching in place
- Single leg balance, such as balancing on one foot with the other in front, to the side, and to the back. I do this on the thick foam pad too which adds to the challenge.
- Ball role under foot again.
- Towel toe crunches. Place towel on the floor, place feet side by side on it. Crunch the toes to pull towel in by the toes. You will need to slide the towel back every 5-6 crunches and start again.
- Foam pad toe crunches. I fold my 1/2 inch foam pad over itself and stand on the corner edges to the toes overhang and then crunch my toes against the edges.
- Blue band pulls. I wrap a band around the leg of a heavy table and around the upper part of the foot and pull backwards to strengthen the muscles that lifts the foot up. It's good for people who have foot drop issues.

Now for the stimulation methods. None of this is proven, but there are have been some small studies. I found this using AI. Unfortunately, the medical industry is not investing in this kind of research for never rehabilitation, but it's something I do most every day.

The idea is to train the brain with new sensations.

- Neurologist tuning fork. Vibrate the end of the fork on the different parts of the foot.
- Electric sonic tooth brush. I keep the plastic cap on the brush and use the plastic cap to vibrate against different part of the underfoot where I have less sensitivity. The way to do this is to close your eyes, do it on the good foot, and then do it on the bad foot and when doing it there image how it felt on your good foot. In theory, it's to train your brain and nerve system. This is a bit challenging being alone because of the body angles. It would be better if someone could help.
- Back scratcher brush under foot. I bought two of them and stick the handles under the front chair legs with the brush facing up to give it stability. Then close the eyes and slide the bottom of the good foot over the brush and the bad foot over the other brush and imaging the good foot feeling when doing the bad foot brush. Do this back and forth.
- Slide the foot over something soft, like a plush soft cloth.
- I have a bucket of rice and still the bad foot in it and swash the foot around, flexing the toes in the rice. The idea is more different sensations.
- I have two other bucks, one with cold water and the other with water hot enough but not too hot that it burns. Place my bad foot in the cold bucket for 5-10 seconds. Then over to the hot buck for 5-10 seconds then back again, doing it multiple times.

It all sounds crazy and probably is, but I have nothing else to try.
Feel free to add more ideas! Thanks!

@pauldandurand Wow, this list is so awesome! Many of my exercises sounds similar to yours. But some of your ideas are new, so I will try, thank you! I also try to go outside daily to walk or jump barefoot on the grass and then I come in, scrub my feet with soap and a horsehair brush, then soak in magnesium flakes for about 20 minutes. Sometimes I lie on a beach towel outside and do my stretches and exercises. I think fresh air and sun are good for us. Since my foot is numb, it's flat and I've grown a bunion, so I also bought toe separators. I recently took a trip and with all the walking/steps, one night I removed my shoes and saw that my socks were bloody. Two toes on my right foot were bleeding because they push forward into my shoe. Like you though, I continue to push forward with research, exercises and prayer! Wishing the best for you, me and everyone else in this forum.

@recovery1
What kind of neuropathy symptoms do you have?

@pegcmke

I am willing to try acupuncture. I am afraid to have more damage come out of all I already went through. I am 62 years old and not sure of anything helping me. One battle leads to another.

Thank you for your post.

@ccchang
It's great how perseverant you are with trying different things. Since no providers are willing to step up to the plate, we have to take our own responsibilities to experiment. The largest disappointment for me was that my situation was caused by two surgeons. They made mistakes and then left it up to me to deal with it. I hear there are thousands+ people like you and me and many of them ended up where they are because of medical negligence. Good luck to you too and please post if you learn something new.

@pauldandurand

Thanks for the detailed list of exercises. I, too, use a sensory ball to massage my feet along with a wooden roller. My neuropathy is related to celiac disease which I believe was triggered after taking methylprednisolone and antibiotics for a sinus infection in winter 2024/25. Neuropathy began on second night of the cortisone taper and then it was time to see the neurologist who did EMG to diagnose PN. In July 2025 I had a test to see if I had celiac disease and it was positive. My neuropathy is due to that and I was managing really well--almost painless by following a strict gluten free diet. However, that changed this past December when a dermatologist did a shave biopsy on my shin. I am more than upset because there was no need to remove this lesion--it was benign and he told me has 40 years experience so couldn't he have known this. Now I am trying to heal and my neuropathy seems to have progressed. I am doing exercises at home and at pt, I get red light therapy and massage. I will be going for an ultrasound next week to see why the shave biopsy site is still causing me pain. Even my last visit to a doctor was so disappointing as I wanted to check my blood to see if minerals like iron, zinc and copper were being absorbed into my system as celiac disease can affect that but I was told it was not needed and that insurance might not pay. Yet, these docs nearly always offer gabapentin which does not have curative value. I have now returned to my concierge doctor who is the one who ordered the ultrasound. Like you said doctors make mistakes and we are left to deal with them. So it is up to us to do as much as we can for ourselves. Wish you the best!!