Neuropathy of the feet: Any advice on how to eliminate the numbness?

Hello! Happy New Year! I am new here so here goes:

I was dx w/Late Onset MS in 2015; spinal tap confirmed MS that started with a buzzing in my torso which I have learned to ignore over the past years. I began having some strange sensations in my feet as though I was walking on small pebbles. I was put on gabapentin 600mg/3x/day by my neurologist. I had & continue to have annual MRI’s to look for new plaque along my spinal cord and in my brain. So far, I am fairly stable w/no new MRI findings. Next MRI’s in 2 weeks. In 2018 I was dx w/bladder cancer and have followed the bladder sparing (I am female) protocols for my diagnosis and have received BCG and Mitomycin as instillations directly into the bladder. At present I am NED. In 2020 just as covid hit, I was dx with breast cancer; Strange location between breast and very close to sternum, but was very lucky to be able to have a lumpectomy followed by chemo and radiation. I am on Letrozole for the recommended 5 year protocol. To date no return or metastasizing of cancer.

Yesterday, Jan. 31st, was 3 years since my last radiation tx. So, you can see I have had a lot of stuff put into me! My neuropathy has gotten progressively worse since chemo ( I lost my hair, my nails and my general sense of well being).

My feet feel as though they are and I describe it thusly, wrapped in duct tape with a numbness & tightness along my arch, behind and under my toes and alongside the outer edge of my feet; there is a “shin guard” feeling going up both legs laterally, again, worse on the right than on the left.

Each time I present myself to my neurologist, she is at a loss as how to treat the neuropathy and recommends more medication or an increased dose which I am leery of doing. I want some wiggle room in case this really gets worse. Right now there is no real pain except for an occasional sharp jab or crawly feeling; worse at night as is usual…I have begun experiencing an itch on my upper thigh, but my legs are sore in places and constantly recovering from weekly injections of my MS immunomodulator.

I am experiencing some balance issues and on a recent trip to NYC, my legs felt heavy and “off” making walking not as comfortable as I have known myself to be.

I can’t take Lyrica, it makes me very nauseous and most of the other meds interact with medications I am already on. I have had OT (I am a long retired OTR) w/electrical stimulation and massage, but nothing has worked. I had spinal surgery in May ‘23 and while it has alleviated the problem the surgery was to have targeted, I still have lower back pain and muscle fatigue. I have begun a simple yoga program to stay flexible and gain stability, but the neuropathy just continues…

I am a problem solver, but I can’t quite seem to get n top of this…from what I read there are so many suffering with neuropathic pain and treatments seem to be hit and miss or attempts at common sense and or treatments outside standard practice and few seem to work.

I am sure there are those of you who are feeling worse or maybe some better…any direction or conversation is welcomed. Thank you for your time.

Can I ask how old you were when you got MS

@ray666 Ray, I have come to the conclusion that with idiopathic PN, it won't hurt to try various items that are realistically priced. Some items might help but I firmly believe it depends on the unknown mysterious cause. This is why what might help for one will not help for all. We have various causes for our PN picked up through life, yet we tend to share common results due to nerve damage. So, I'll gamble the $20 but not place any high expectations. This way, I'll be surprised. Also, this particular numbness topic started about 10 days ago and I wanted to make a quick comment that when I'm more active, I do notice the numbness does not progress. I live along the beach, and we have good weather April to early November, and we try to walk outside as much as possible. It appears that the progression does not take place during these months when I'm more active outside. So, is this perhaps a clue to slower progression?? Is this why doctors suggest PT?

Yes I also take both Frankincense and Mehr and B12, and ALA. All seemed to help somewhat! I have a question though, my PN (if it is that) seems to go away when I am off my feet ? then comes back during the day and gets worse with activities? Has anyone experienced that?

@ray666 Ray, I have come to the conclusion that with idiopathic PN, it won't hurt to try various items that are realistically priced. Some items might help but I firmly believe it depends on the unknown mysterious cause. This is why what might help for one will not help for all. We have various causes for our PN picked up through life, yet we tend to share common results due to nerve damage. So, I'll gamble the $20 but not place any high expectations. This way, I'll be surprised. Also, this particular numbness topic started about 10 days ago and I wanted to make a quick comment that when I'm more active, I do notice the numbness does not progress. I live along the beach, and we have good weather April to early November, and we try to walk outside as much as possible. It appears that the progression does not take place during these months when I'm more active outside. So, is this perhaps a clue to slower progression?? Is this why doctors suggest PT?

Yes mine is worse at night after a busy day on my feet or after load bearing exercise.
I just got a salve that I can use on my feet that is great to ease the pain from Camp Wander. It really works the best of anything I have tried.

I'm 55. I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling, numb, painful nerve strikes, etc..) in 2018 which nerve damages eventually spread into my calves and thighs plus waist. Until this day(2023), I have been dealing with incurable, unmanaged, uncontrollable diabetes II and painful lower body neuropathy (PM).

After all the doctors, neurologist, emergency rooms, hospitals, etc.. , plus prescribed medications (pre-gabapentin/gabapentin, Juniva, Metformin, Duloxetine, etc.. I awfully regret to spend thousands and thousands of dollars (Out of Pocket and/or Insurance)…

After 5 years with such conditions, you DO NOT want the neuropathy (PN-nerve damage) to quickly spread and affect your entire feet, calves, thighs, waist and hands as it is an extremely terrible feeling along with very poor state of mind, anxiety, stress, nervousness with daily activities, etc.. And not to mention, impotent for the last 4 years and specialized doctor(s) want 20K to make you believe that they can help with it. I declined!

Sadly, REAL answer for these serious mental and health complications and conditions were experienced as "NO CURE" ! The final solution mentioned was to amputate feet, legs, and hands. I could not live with myself with such decision. I will continue to endure and suffer which I have accepted to convince mind it is a part of the remaining style way of my life. Most importantly, my disability claim was denied with lawyers and by judge. I was devastated!!!

To say the least, I am attempting to remain positive with the job market. Currently, unemployed. I adopted a 4 year dog (German Shepherd) to help encourage walking at least 4 times a week which helps body, muscles, and aggravating feet and leg nerves and simply ignore the pain. Currently, ICY HOT is the best but only short time relief that I use as of today (Maybe try ICY HOT but the "cream" not roller or spray) and an adjustable 6 feet roller with 3 speeds to massage the feet.

My dog is amazing! I seriously regret not adopting dog long ago.

My advice is to eat healthy, "exercise', and most definitely "Save your Money"…

My prayers are with you …

Camp Wander has 30 different salves. Which one(s) are you using? Frankincense is in about 5 of them. Thank you

Yes I also take both Frankincense and Mehr and B12, and ALA. All seemed to help somewhat! I have a question though, my PN (if it is that) seems to go away when I am off my feet ? then comes back during the day and gets worse with activities? Has anyone experienced that?