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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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Thank you.
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For sure balance is an issue with PN. I don’t care what shoes you buy, nothing works. Your feet don’t talk to your brain and you walk like you drank a bottle of Scotch. I’m fortunate that my PN is painless. I just have numbness and tingling going on. I don’t waste my time going to Doctors anymore as there’s nothing they can do about PN. Its here to stay.
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4 ReactionsI have been told the same, but I only have sporadic back pain, do you have back pain? My balance is ok at the moment but it’s scary thinking what the next ten years will bring I’m only 65.
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1 ReactionAn elliptical under the desk pedaler has helped my balance. I use it as i sit in front of the TV and it's relaxing.
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2 ReactionsI have no back pain. I was taking Gabapentin for the nerve burn pain prior to my laminectomy surgery, May 2021. After surgery the burning was gone and I do not take any medication. I am very fortunate in that respect. There is numbness, pins and needle sensations from waist to much worse in my feet. I’ve done physical therapy and massage to no avail. My balance or lack of, is getting worse. I use a cane and just deal with it.
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1 ReactionFirst of all to be diagnosed with small fiber neuropathy you have to have a biopsies 2. EMG/ Nerve Conduction Test by a neuromuscular neurologist.
3. You have to find the etiology aka cause of the neuropathy for treatment. Otherwise it will get worse. After seven years an ENT biopsies my lip for the glands took 4 positive for Sjogrens and went to eye doctor asked him to do the test for Sjogrens positive and my corneas all scratched up positive for Sjogrens blood work negative. Medical hospital records in 2009 show Lupus. Took pictures of my face every day showed the rheumatologist the pictures of the butterfly rash.
My blood work showed negative for everything but my ANA, sed rate, complement C3 elevated for inflammation. Here are the labs required to have done before seeing Dr Oaklander.
Read the neurologist specialties to verify they are a neuromuscular neurologist they are hard to find especially a good one. Dr Oaklander is out of Boston. She sees people in Florida and one other state.
Read Dr Anne Oaklander she is a research neurologist. She has a lot of lectures online to listen too. You should be able to understand the terminology she uses.
She referred me to a neuromuscular neurologist, rheumatologist, immunologist and pT with a neuromuscular physical therapist.
I am an RN also.
I have autoimmune severe axonal sensorimotor peripheral polyneuropathy, dysautonomia,
Small fiber neuropathy and CAN- cardiac autonomic neuropathy. It does move into your organs they have nerves. My body temperature does not regulate itself, my blood pressure is up and down, and I have bradycardia and tachycardia,just any fyi if your hands and legs get tremors it’s the motor neuropathy. They believe my seizures caused from neuropathy.
My husband has to cut my food and sometimes feeds me. I use a cup with a lid on it where I don’t spill water all over me. I don’t feel my feet to my knees and don’t feel my hands to my elbows. Constantly, cutting myself when I cook. I am 62 and mine started in 2002.
Treatments I use IVIG Panzyga it takes away my balance problems and dizziness along with making my tremors better until it wears off. Rheumatologist does not know how to prescribe correctly next appointment will show him the instructions. There is a lot of information for neuropathy as nursing credits. I kept my license even though I can’t work to read up and learn. Hope this helps you.
The other web site foundation for peripheral neuropathy has a lot of information but I learned more from Dr Oaklander’s lectures.
https://www.google.com/search?q=dr+Anne+OaklNder&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari&sei=I4zGZ9TjJLXgwN4P5Oyz2Q8#
Here’s another one
https://www.facebook.com/AANResidentsAndFellows/videos/in-this-episode-of-the-neurology-podcast-dr-shuvro-roy-and-dr-anne-louise-oaklan/518144337739166/
Here’s another one
https://www.google.com/search?q=dr+Anne+OaklNder&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari&sei=I4zGZ9TjJLXgwN4P5Oyz2Q8#