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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@orangerainbow The medline rollator with seat and storage basket. Folds flat to place in trunk or back seat. $69 on Amazon and super easy to put together and sturdy.
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2 Reactions@blessedsista24 I went to a Dick’s Sports store in our mall, and tried on several pairs of shoes and took good walks around the store. And, physical therapy helped so much. I do use a cane outside the home. Cane and a rollator on the ground flooring the house. Oddly, I don’t use any assist upstairs. Carpeted and narrow hallway and small rooms. Always something to touch correct balance. 😀
@njed
Ed. I have BIG problem with Balance. Also my Hands are Very Stiff. I have CIPN. ALSO I travel with those sticky handle. They work great. You just need test them on all different surfaces. Damn I just wish my Neuropathy would go away !! It’s been at least 2 1/2 years since I completed my Chemo.
@3740 I hear you loud and clear and sorry to hear about your CIPN. We all have different causes for our PN yet many of us have similar effects as a result of the nerve damage. Agree, the balance is very problematic. I am idiopathic, going on 10 years, yet have some suspensions as to cause. I hope your PN improves over time. Stay well!
Yes, the grab bars work well for the shower. I also am seeing a physical therapist for balance. I hope it wors. My neurologist wants me to have my hips checked by an orthopedist. No pain, just ideopathic neuropathy.
Does anyone have a problem with driving
@marina88 Hello! How does one qualify to receive to IVIg? Is it only for autoimmune issues or can it also be used for peripheral neuropathy?
@3740 my peripheral neuropathy causes pain, numbness and balance problems. I’ve had it 15 years. It’s idiopathic- they don’t know what caused it. I have learned to live with it, although I’ve fallen five times since last July. I didn’t break any bones, thank you Jesus, but I sprained my ankle, and it’s still not completely healed. I’m sorry you have PN - I know what You’re going through.
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1 Reaction@sewsforfun
My peripheral neuropathy is caused by an autoimmune disease and my neurologist prescribed IV Ig. I’m not sure if it has to be autoimmune.
Maybe talk to whichever specialist diagnosed your PN and have them request it. It’s expensive, so not easy to get insurance to cover it.
Good luck