Is loss of balance your primary complaint with neuropathy ?
Is the loss of balance your primary complaint with PN? And, fear of falling?
I have no pain in my feet. I do have numbness of primarily my toes and forefoot, and to a lesser degree of the whole foot and ankles. My feet have weird sensations of walking on mashed potatoes and sliding sideways; when I haven’t actually moved at all. Scary. I claw at the air thinking I am falling. My toes are curled and they feel stuck together. Carpeting really adds to the sliding sensation.
I am a 73y old woman and, up until the last year, I volunteered with an animal rescue and walked on uneven cement dog runs, cleaning enclosures and feeding and walking dogs. Eight years 2-3 hours, several times a week. Retired nurse and never had a sit down job. Could walk for hours in DC, just exploring.
Now I have to hold onto something when walking or I feel like I am falling. Not going out as often. Sliding sensation is mostly at home on LVP flooring and carpeting on stairs. I wear slipper socks at home. Referred to a neurologist and saw him after a 3 month wait. He has great reviews. At first he was encouraging, sure that I had an inherited condition, which I was sure I did not. 2nd visit, after lab work, he attributed it to SFN related to metabolic syndrome. He had just attended a conference. He then added ALA to the B12 prescribed by my primary. He didn’t even know if ALA was over the counter, so he sent an Rx to my pharmacy. Said he would see me in a year. I felt dismissed. Never even looked at my feet. I did research, and now take R-ALA 300 mg twice a day and B12 2000 mcg once a day. Not sure if I have been taking the supplements long enough to notice a difference. Research led me to toe spacers, toe exercises, Hoka Clifton shoes, floor based foot massager, open toe compression foot socks, and Bengay at night; Bengay for discomfort but not pain when going to bed. Actually, I bought the Hoka shoes before the numbness started, because my balance felt off. They are the only shoe I can wear now. Starting today, I am experimenting with a Zero Sunrise shoes as opposed to slipper socks in the house, to increase feeling in my feet. I have a purchased a Bob and Brad massage gun, but have not opened the box yet.
I am thinking of asking for a referral to a podiatrist to actually have my feet seen and suggestions for improving balance.
I welcome your experience and suggestions for what has worked for you.
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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.