Is loss of balance your primary complaint with neuropathy?

I presume you've had the obvious thyroid and diabetes tests?

I've had mild neurology symptoms for about 5 years, but with 'aging' and old injuries from a serious car accident in my 20s, I tended to just accept them. I have annual blood scans which are all within normal range.

Yes B12 is water soluble but can still build up and cause toxicity. Vit B6 (also water soluble) is just emerging as a big factor in causing PN when it reaches toxicity levels.

Many of the symptoms of deficiency, in certain vitamins, are identical to the symptoms of toxicity - so someone may be toxic but the doctor reads the symptoms as deficiency and gives them more. They only way to know is get a blood test.

I was shocked to find how high my levels of B6 toxicity were - and coming off is no picnic either. I was taking 25mg (pyridoxine hydrochloride) a day (with magnesium) for nocturnal leg cramps. The 100mg safe daily limit has just been lowered to 10mg here in Australia.

I'm taking the lowest doses possible of magnesium 110g, B12 100mcg, D3 1000iu, ALA 300mg and ALC 500mg. Drinking lots of water and just started hydrotherapy. I get terrible cramping in my feet. Ataxia is my worst symptom - unsteady on my feet, can't find my mouth with a cup, swaying like I'm drunk, slurred speech, unclear thinking, hitting my hands on surfaces, general clumsiness. Second would be fluctuations in my eyesight and inability to focus. Plus the usual days of despondency.

Its healthy to share experiences on sites like this with people who are genuine and kind.

I think it may be time for an update.
On reflection, I probably had early symptoms as long ago as 15 years or so. My feet would get very cold, and toes would turn purple in the evenings. In bed, my feet throbbed. I always felt like I had socks on, even when I didn't. Cannot recall pain or any strange sensation when walking. When I had to quit working in 2011, I no longer had the pain. Cold toes intermittently. Still feel like I had socks on, when I didn't.
Sometime in the last 4 years, I started feeing like I had rocks in my shoes. Felt the rocks when I just walked in slipper socks in the house too. Started looking around for shoes with a wider toe box and more cushioning and arch support. Sketchers and Atra were good. Rocks sensation disappeared, even in the house.
In the last two years, I started feeling itchy all over, only at night. Bed clothes seams bothered me. Wore them inside out. Still do. Didn't like a cover on my feet. And, I always been blessed with good sleep. No longer.
A little over a year ago, my feet started feeling heavy. No pain. Then, I couldn't walk straight, always swaying as I walked; felt more balanced holding on to a shopping cart. At home, slipper socks no longer safe. I had to start wearing wear my Altra shoes indoors. Walking on the upstairs carpeting was really scary. The carpeted stairs the worst. The worst.
Today, my left foot is much more impaired than the right. Numbness started with toes and ball of foot. Now the whole bottom of the foot; often I just don't feel the surface I am standing on. Numbness has moved up to the outer calf, but to a much less degree. Right foot has numbness, but I am always sure it is on solid ground and will support me. I dont want that to progress. Exercise and keep moving. My toes on both feet were curled in; tight, stiff, painful. Much better after doing massage and stretching of the toes every night. I use a lotion with menthol, then Bengay cream and really massage and bend the small toes in toward the ball of the foot and then pull them away from the ball...all four toes together, the big toe separately. 3-4 times each foot. It is a bit painful the first few nights. Toes much better today, left foot still quite tight, but noticeable improvement.
With the increased numbness, I started using a cane, but I never felt in control of my balance. Never. I now use a walker and I am just beginning to go out with it. I am asking for gait training on Monday. Have not been out alone, but I can still drive.
I have a bath bench for the tub...a real winner. Toilet rails. And, a cane made for using on the stairs. Still scary, but much easier on me and my husband. I do have a stair lift being installed this week. It would have cost far more to get a shower on the first floor.
I wear my Hoka Clifton 9 shoes all the time now. I have one pair just for the house. Everyday, I use 1-2 exercise units; a recumbent bike, a foot massager or a portable elliptical machine. I've found that you do need to take a break every 3 days or so, from those machines. Really.
I get up and walk often. Just the process of getting to a standing position has made my legs and knees stronger.
I use an office chair, on wheels, to do my laundry and clean my bird cages. And, so much more. I try to stand up straight and do the dishes and clean the counter tops. I can no longer carry my 16 year old chihuahua upstairs. Dad takes her up first.
Oddly, I now walk on the carpeting upstairs without feeling I'm falling. I do touch the walls for balance. Even in just socks. The stairs are still just a nightmare. I thank my husband, and God every night when I reach that last step.
A note; the Zero shoes did not work for me. I wanted them to, but no. I wear bamboo socks at night. Soft and stretchy.
I do not take anything for pain. I have been offered gabapentin. I do not have pain. I take B12 2000 mcg, a
B Complex tablet, and R-Alpha Lopoic Acid 600 mg. I Have no clue if they help, and I question the B 12 strength. I believe exercise and, moving often, helps. I will be going back to the senior center Monday and using the machines for the legs and knees. Maybe see if they have a chair exercise class. I have a video I have just started using from YouTube; Cancer Rehab PT. 'Exercises for Peripheral Neuropathy in the Feet and Legs.' The physical therapist does a great job of demonstrating and explaining the exercises. She makes it look easy. They are easy. Just have to do them.
I am so very thankful to have found this support group. I have learned so much and have been encouraged. That is the best part. Encouraged!!!

I use many things for the numbness I have in my feet due to chemo . Lately, I find one of the under the desk elliptical Pedalers helps me with my balance and circulation. I can do it for hours. I just kind of space out while using it watching TV. I'm 83. You can find one for as little as $100 at Walmart and Amazon.

Thanks for the reminder. When I decided to move back to the mainland from Hawaii, I was determined to
find what I call social “islands”. These were small groups of folks with similar talents and/or interests. For example, I attend an exercise Zoom island on Tuesday mornings. The leader lives in Montana. Then, on Wednesday evening, about seven ladies get together on Zoom for a weekly study and practice of mindfulness.
On the first Friday of each month at least 8-10 folks join Jay and me at our home for a group dinner and review of current physical behaviors including neuropathy. In the spring we plan an afternoons of entertainment on a lake boat. The relaxing air and boat ride are quite helpful.
Quite a few of us attend summer weekend retreats and small groups of three or four have what we call Trio Chats.
With different activities, entertainment and weather we find new ways to forget neuropathy for a few hours.

Just saw a chipmunk come up on the front porch to look for spring treats. It is sunny and warm. I am going to take my neuropathy outside for an introduction to Spring.

Chris

I've been tested (positive) three times for neuropathy and they referred to it as Peripheral Neuropathy. I've also been diagnosed, repeatedly, as having Raynaud's Disease (or Syndrome). For anybody with balance problems, I'd suggest they google the disorder. I'd have to say that it's Raynaud's. More and deeper numbness, much more pain, more sleep problems because of toe sensitivity....check it out if you're a maybe. I get relief from Cymbalta, woolen socks (loose fitting), wearing boots in the house (concrete floor in New England. BRRR), and for my neuropathy I take B12. Am very allergic to Gabapentin, but it was a slow progressing reaction and caught me unawares. I clearly remeber giving away $200-worth of my last script to my cousin, amazed that there was anyone on Earth who could tolerate it! And arthritis-strength Tylenol, thrice daily, ever since medicare became so touchy about Pain Medications. Next month, however, I'll be taking medical maijuana for both conditions. I may figure out (again) how to transfer photos from iPhone to laptop PC and will show you my tozies.

I have so many, crazy, seemingly, unrelated symptoms, I don't even know where to begin. Let me say that starting back about five months go, several symptoms began to appear for the first time. Sinus congestion, slight inner ear pain, then dizziness started. After a while my voice began to become sort of, uh, "gnarly". Also having terrible leg, ankle, and foot pain, tingling and numbness. I was diagnosed with peripheral neuropathy last June but did not have any of the above mentioned symptoms. ENT put me on pantoprazol and nasal sprays but haven's seen any real improvement except the inner ear pain seems to be gone. Someone mentioned silent GERD, but I am not convinced. I would like to at least get my normal voice back again so I sound like "me". Sometimes it's hard to just speak. Very frustrating.

heisenberg34, consider an upper endoscopy. It could be that your vocal folds are degraded by reflux. You can have injections in the vocal folds that could restore your voice. The danger is that the erosion can lead to cancer.
Reflux could be causing the sinus trouble. I get dizziness with sinus congestion and use sudafed to great relief. A voice can be made gnarly by excess mucus. Pantoprazol can cause joint pain.

Hi,
Loss of balance is not something that has concerned me in particular. I tend to wonder over the footpath when walking using it's full width. Occasionally the left leg forgets to step and I stumble, but the brain has figured it out and can react before I find in ness' to kiss the ground. It is just something I have had to manage. I have little tactile sence in my feet, calves, arms and hands but have been dealing with it for some time. It now is just part of me like it is all I have ever known. I'm lucky that I only get random sharp pains occasionally and know to watch where I'm putting my arms or feet. If I can't see it I couldn't tell you what I'm touching, I just know there is something there. Sort of feels like I'm walking on air, if that was possible. I'm always damaging my left leg and foot which happen to be worse than the rest of my limbs. I can't tell the difference between a sharp pin prick or a dull ball pen touch on any of my limbs but I can tell when I'm stabbed with something sharp and there is some pain. Seems to have to be quite deep for me to feel it. The numb tingling feeling is slowly creeping up my lower leg to the knee. Slowly being relative as I was not aware I had the problem in my feet until I was questioned about it. It has transitted from my feet to my knee in 4 months so as to if that is quick or slow I don't know with nothing to compare it to. I'm starting to have bad dexterity problems with my hands which I asumme is part and parcle of neuropathy. I don't medicate for any of it, yet. I do have avery high pain threshold so that may account for only feeling deep pain.
Cheers

Thanks for your answer. That seems like a possible answer to my voice problems. I can't seem to get the ENT people here in Delaware to look further and deeper into my problem. They sent me to a local neurologist who spent all of six minutes with me. As soon as I mentioned neuropathy, his response was, "Oh, there's no cure for that. I have to take this call". You would think that after four or five months on this junk with no real improvement, they would want to take a deeper dive. Nope. Make an appointment for next month. See ya.

heisenberg, voice is the least of it? Have you had autoimmune testing ANA for a start. A rheumatologist might be your next professional. I would want DNA testing.
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-bone-marrow-transplants-for-autoimmune-disorders/
https://www.uchicagomedicine.org/forefront/immunotherapy-articles/car-t-cell-therapy-treating-autoimmune-diseases
https://www.sciencedaily.com/releases/2025/03/250313151810.htm
https://health.ucdavis.edu/news/headlines/a-breakthrough-for-lupus-treatment-study-explores-car-t-cell-therapy-for-autoimmune-disease/2024/05#:~:text=A%20recent%20study%20published%20in,LN%20who%20have%20active%20disease.