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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

harley22 | @harley22 | Aug 18 7:58pm
In reply to @patevans "My name is Pat Evans and I am 83 years old and have had neuropathy for..." + (show)
@patevans

My name is Pat Evans and I am 83 years old and have had neuropathy for over 10 years. I’m on Lyrica 300 mg, gabapentin does not work for me any longer. I have been to Duke University for testing, had muscle testing, nerve testing, a MRI of my brain and every blood test you can think of, Diagnosis I have peripheral neuropathy and it is idiopathetic. I’ve never had chemo am not a diabetic, nor exposed to heavy metals. I’ve been to 4 different neurologists, 3 different foot doctors, an orthopedic doctor, all say the same, they don’t know why i have neropathy. I’ve had custom insoles made, bought every over the counter ones I can find, bought every brand of shoe I can think of and I can only wear Uggs slippers. Have gone from a size 9 1/2 to an 11 shoe because my feet want lots of room. I’m so discouraged at this point. Very difficult to walk because of the pain in my feet. Looking for any suggestions to something I may not of tried or even a Doctor I need to see, Thank you

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I’m having the same symptoms as you.
Can’t walk because my feet hurt so bad.
I’ve tried all types of shoes and my feet start to hurt shortly after I walk in them.
I also have seen at least 7 neurologists in past 12 yrs and I’ve gotten no help from them.
I’ve been on all the routine meds for neuropathy with no help from any of them.
Now I take ibuprofen and Tramadol for my pain and it gives me some relief.

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keven34 | @keven34 | Aug 22 9:51pm

I want to know about the energy level when anyone cross the age 45, is this true that regular physical activity in older adults is associated with a lower risk of cognitive decline and dementia!

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 23 7:13am
In reply to @keven34 "I want to know about the energy level when anyone cross the age 45, is this..." + (show)
@keven34

I want to know about the energy level when anyone cross the age 45, is this true that regular physical activity in older adults is associated with a lower risk of cognitive decline and dementia!

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Welcome @keven34, There is some research that suggests it's true and at 81 I am not as active as I once was but I do try to exercise daily along with other physical activities.

"Extensive research links physical activity with better cognitive outcomes across the lifespan1 and a decreased risk of dementia. Many different specific cognitive domains have been suggested to be associated with physical activity, but the evidence is inconsistent."
-- Physical Activity and Cognitive Decline Among Older Adults
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10835510/
How about you, do you try and stay active doing something that you enjoy doing?

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meganm309 | @meganm309 | Aug 25 1:58pm
In reply to @centre "I googled and called the Walkasins company first (they’re in Eden Prairie, MN), asked for practices..." + (show)
@centre

I googled and called the Walkasins company first (they’re in Eden Prairie, MN), asked for practices in PA where I could be evaluated for their use (there were only two places in the entire state). I made an appointment with the closest practice (2 hours away) and asked my PCP to FAX a referral to them for “PT Eval and Treat” ( gives the PT a lot of latitude to do whatever, insurance will cover the visits). Turned out the clinic was within my insurance network. The Walkasins people are very upfront that insurance does NOT cover the Walkasins product, and they are expensive, but I felt desperate- hoping they would help me.After the eval, when the Walkasins didn’t do anything for me, the PT referred me to another practice that did “Gait Analysis”. I asked my PCP to FAX an order for “Gait Analysis” to that clinic (insurance paid), once my special shoes were made, I returned twice for adjustments, insurance paid for those visits, too. I bought two pairs of new Brooks sneakers from Dick’s and paid the PT privately for adapting the shoes- $120/pair. The adaptions made such a difference, I wanted two pairs- one to keep in the closet for future use, one to wear. They’ve made such a difference in my walking that I wear them exclusively when out of the house.

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How much did Walkasins cost? I have Cerebral Palsy and I’m looking into them.

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centre | @centre | Aug 25 7:16pm
In reply to @meganm309 "How much did Walkasins cost? I have Cerebral Palsy and I’m looking into them." + (show)
@meganm309

How much did Walkasins cost? I have Cerebral Palsy and I’m looking into them.

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When I looked into them around 2020, they were between $4000-$4500. If you call their corporate office in Eden Prairie, MN, they can tell you the nearest PT clinic to you that has a PT trained in their use and the models to try. You can’t leave with them though. As I wrote, I could feel the electric zaps, but they didn’t do anything for me.

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kbirchem | @kbirchem | Aug 26 5:23pm
In reply to @amaze02 "I'm a type 2 diabetic , I get occasional pain in my legs. Trying to increase..." + (show)
@amaze02

I'm a type 2 diabetic , I get occasional pain in my legs. Trying to increase my knowledge, for treatment and slowing its progress.

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I am a T2 diabetic also . My blood sugars have been ok over the years . I was in a vehicle accident several years ago . I was rear ended by an 18 year girl that was driving without brakes . Since then I have had a laminectomy on my low back . That really helped with my pain in my feet and legs . I have also had several treatments of PRP injections in both of my feet . The PRP injections helped with the cold feet . My feet are no longer cold . I saw a Doctor Richard Arness at Sanford health in Fargo ND . Dr Arness is a Podiatrist . I also put a salve on my feet from Mary Janes medicinals . I mix it with Magnesium lotion . It also helps with the pain in my feet and legs . I am now making my own tinctures .

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rayhoosier | @rayhoosier | Sep 14 6:52am
In reply to @maryv449 "Have you tried cold laser therapy? i have been using it and it has made a..." + (show)
@maryv449

Have you tried cold laser therapy? i have been using it and it has made a world of difference, I can even sleep all night through without waking up with the burning pain. I bought mine at Amazon for $129. and I am so glad that i did. 2 of my friends bought one too and they are experiencing great results too. My brother in law uses it for his shoulder and getting relief too. The good thing is with Amazon is you can return it if you don't like it. Good luck with whatever you choose. Neurapathy is a miserable thing to have.

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Any updates?

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fred101 | @fred101 | Sep 15 2:52pm

Thanks to everyone who is involved in this very worthy cause. I am an 80 year old Vietnam Veteran and was exposed to agent orange way up North in Vietnam and to many years of using weed sprays so am sure this is a combo of problems relating to my immune system!!

I have tried everything and anything, but all my doctors come to the same conclusion that I am lucky to be alive this long and not really anything they can do, since I am so allergic to opiates and most meds. I have also tried Ketamine treatments that did not work and most recently the RFA process that did not help either after 3 treatments.

I am like everyone else in hoping and praying someone come across some miracles that may at least give some kind of relief from all the terrible pain associated with these aliments and maybe something that would work to keep things in check as I get worse each day and having trouble walking now and all the weakness that has spread throughout my body, I keep trying and doing exercises 5 days a week and taking lots of supplements.
I am in the twilight of my years and so very thankful for the wonderful, rewarding, and happy life I have had- especially with my second wife who is the love of my life and best friend and my really special and caring family. Semper Fi.

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martellg | @martellg | Sep 15 6:27pm

My wife (62) has long-term bilateral peripheral neuropathy in her legs (along with many other issues), is weak, and has trouble walking/standing. Symptoms have increased over the past several weeks, and it appears she is likely to be wheelchair dependent soon. She is on SSDI and Medicare. Especially things you would say "I wish I had known that sooner" Next neurology appointment is in four months. Have requested a script for a wheelchair, and any advice. Trying to find out what issues I need to be concerned with and how best to manage whatever is coming up.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 15 7:08pm
In reply to @martellg "My wife (62) has long-term bilateral peripheral neuropathy in her legs (along with many other issues),..." + (show)
@martellg

My wife (62) has long-term bilateral peripheral neuropathy in her legs (along with many other issues), is weak, and has trouble walking/standing. Symptoms have increased over the past several weeks, and it appears she is likely to be wheelchair dependent soon. She is on SSDI and Medicare. Especially things you would say "I wish I had known that sooner" Next neurology appointment is in four months. Have requested a script for a wheelchair, and any advice. Trying to find out what issues I need to be concerned with and how best to manage whatever is coming up.

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Welcome @martellg, I know it's difficult trying to figure out how to deal with a condition like neuropathy and not knowing what to expect. I think it's great that you are able to help your wife best manage whatever is next. I think learning about your wife's conditions including the peripheral neuropathy is one of the best things you can do to help. One of the best sites that I have found helpful to learn more about neuropathy and available patient resources is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/.

You mentioned your wife has peripheral neuropathy in her legs along with many other issues and has trouble walking/standing. Does she have any pain with the neuropathy or just numbness?

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