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Living with Neuropathy - Welcome to the group

Posted by @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?

REPLY

@pfbacon

My feet are starting to drop. I am paying attention to lifting my knees when I run and walk but I'm forgetting sometimes and tripping/catching it before I fall. I will look into braces that keep feet from dropping. Have any of you tried those? Peggy

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Pfbacon
I've have a total drop foot due to the butcher surgeon who did surgery on my back. I can't move my toes nor my foot at all. I have a foot brace I purchased on Amazon. It's very sturdy, light weight, so comfortable and covers my foot from my heel to the end of my toes. If you choose to go to a prosthetic place they have some, not a lot of samples, you can try on.
He offered my a bulky black brace. Not good at all. Then he offered me one like I've just described that the have on Amazon and it did the trick.
The comparison of each of these is amazing. Believe it or not, I can drive perfectly with it. Hope this helps.
Good luck and happy new year to all of you out there
Rose

@jenniferhunter

@lioness I think you are asking about the Dolphin Neurostimulator that is a device to send an electric current (between 2 devices) which blocks the neurotransmitters (temporarily) and reduces pain. My physical therapist used this on me, and I would have improvement for about a week, not totally pain free, but less pain and less muscle spasms being caused by the spine problem. This was when I needed spine surgery and couldn't find a surgeon who would help me. It is a weird sensation when using it, and there were a few times I felt queasy, but it reduces pain without drugs. Here is the link about it.
https://www.dolphinmps.com/

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@jenniferhunter thank you for link I just emailed my Dr for a P T referral my thigh pain it never lets up Hears to a Happy New Year

@jenniferhunter looks good I have a Tens unit I use ,the price is to high for me I need to get new pads for my tens Thanks for the link

It seems to be like the device called "Tens". Do you think they are the same?

@geegie

Pfbacon
I've have a total drop foot due to the butcher surgeon who did surgery on my back. I can't move my toes nor my foot at all. I have a foot brace I purchased on Amazon. It's very sturdy, light weight, so comfortable and covers my foot from my heel to the end of my toes. If you choose to go to a prosthetic place they have some, not a lot of samples, you can try on.
He offered my a bulky black brace. Not good at all. Then he offered me one like I've just described that the have on Amazon and it did the trick.
The comparison of each of these is amazing. Believe it or not, I can drive perfectly with it. Hope this helps.
Good luck and happy new year to all of you out there
Rose

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I'm a big advocate of leg braces for drop foot. If you are on Medicare good leg braces should be covered and yes go to a clinic that specializes in Orthotics and Prostheses. I've had two versions both that slip into my shoes with custom orthotics, and then strap up around my legs. The second version is much more efficient and I get considerably less fatigued wearing them. It is bulkier but the results for my walking are so much better.

@geegie – Can you tell me how you were able to connect the foot drop to your back surgery? My foot drop became apparent following back surgery but my doctors then thought it was connected to another genetic disease in my family. Did your surgeon ever acknowledge that the foot drop was a by-product of the back surgery? Thanks, Margot

@margottaylor

@geegie – Can you tell me how you were able to connect the foot drop to your back surgery? My foot drop became apparent following back surgery but my doctors then thought it was connected to another genetic disease in my family. Did your surgeon ever acknowledge that the foot drop was a by-product of the back surgery? Thanks, Margot

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Hi Margot, No, my neurosurgeon never did acknowledge the fact that my back surgery was the cause of my dropped feet. I presumed that it was the cause of my drop feet since it (drop feet) happened shortly after my surgery. I will add that I just had a nerve conduction test given by a neurologist. The results firmly stated that my surgery was not the cause of my dropped feet. So, I am now presuming that it is genetic in nature. My dad had “neuropathy” that was probably never correctly diagnosed. Wish I could have given you more positive information to help you with the cause of your foot drop. This is not fun to deal with! Good luck in your quest for more knowledge.

@margottaylor

I'm a big advocate of leg braces for drop foot. If you are on Medicare good leg braces should be covered and yes go to a clinic that specializes in Orthotics and Prostheses. I've had two versions both that slip into my shoes with custom orthotics, and then strap up around my legs. The second version is much more efficient and I get considerably less fatigued wearing them. It is bulkier but the results for my walking are so much better.

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Oh my gosh, you are an angel in disguise!! I just got my first pair of orthotics that must be similar to the second ones you referred to. I went to a orthodox/prosthesis physician and they were covered by Medicare. These come up to mid leg with velcrose closings. They are not very comfortable. I have an appt to go back for an adjustment. What kind of shoes do you wear with them? I didn’t realize I was so vain but, I guess I am. I have ordered and returned 6 pairs of orthodoc shoes and they are UGLY. I wear a 9 1/2 shoe and then add the 1&1/2 size up (for orthotics) plus extra wide width ( for orthotics) and you end up with GIANT shoes. HELP!!!

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@cordy

Hi Margot, No, my neurosurgeon never did acknowledge the fact that my back surgery was the cause of my dropped feet. I presumed that it was the cause of my drop feet since it (drop feet) happened shortly after my surgery. I will add that I just had a nerve conduction test given by a neurologist. The results firmly stated that my surgery was not the cause of my dropped feet. So, I am now presuming that it is genetic in nature. My dad had “neuropathy” that was probably never correctly diagnosed. Wish I could have given you more positive information to help you with the cause of your foot drop. This is not fun to deal with! Good luck in your quest for more knowledge.

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Really interesting Cordy as I had several EMGs that horribly painful nerve tests and my surgery never referenced my surgery being the cause. My father like yours had neuropathy and wore a brace like yours.
I’ll send you a photo of my leg braces that are much lighter or more ergonomic than yours that look super clunky. I do like that you deserve something lighter.
My braces are black and made of a composite material that can be cut/shaped to my needs.

Regarding shoes…. that’s been my constant challenge as I’m refusing, even at 72 years old, to wear ugly shoes. I’ve had to go a 1/2 size larger and will get a wide if they are available. I also wear custom slip-in orthotics on top of the flat foot bottom of my braces.

Send me your email address for me to send the photos of my braces, orthotics separately and on my legs.

@margottaylor

Really interesting Cordy as I had several EMGs that horribly painful nerve tests and my surgery never referenced my surgery being the cause. My father like yours had neuropathy and wore a brace like yours.
I’ll send you a photo of my leg braces that are much lighter or more ergonomic than yours that look super clunky. I do like that you deserve something lighter.
My braces are black and made of a composite material that can be cut/shaped to my needs.

Regarding shoes…. that’s been my constant challenge as I’m refusing, even at 72 years old, to wear ugly shoes. I’ve had to go a 1/2 size larger and will get a wide if they are available. I also wear custom slip-in orthotics on top of the flat foot bottom of my braces.

Send me your email address for me to send the photos of my braces, orthotics separately and on my legs.

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Well, I tried to send my email address and they wouldn’t let me do it. Thanks for offering but I guess it’s against the rules at Mayo. Appreciate your help!

@cordy

Well, I tried to send my email address and they wouldn’t let me do it. Thanks for offering but I guess it’s against the rules at Mayo. Appreciate your help!

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Hi @cordy, you can send your personal contact information including email address if you use a private message to a member. The Get Started on Connect users guide explains how to send a private message to a member here:

https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

The reason it's not allowed in a normal discussion post is to protect members privacy and security. When your email address appears in a discussion post it can open you up to spamming from outside sources. You can access the Get Started on Connect user guide from any Connect page by going to the bottom of the page and clicking the link under Mayo Clinic Connect column at the left side.

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If you live within driving distance of the Minneapolis area, the Minnesota Neuropathy Association is having their next meeting at 10 AM on Saturday, February 2nd. MNA presents a repeat of one of our most popular programs: Circle of Conversation

You are the program! You have a great incentive to discover what works, and this is your chance to share it with others in small groups, and learn what has worked for them. What medications/treatments do you depend upon? How do you pay for your medications? Is there anything surprising about neuropathy? We'll discuss these, or questions like these, changing them every 15 minutes or so. It's OK to just share an idea, something your doctor recommends,
or an article you have read……or you can just listen. And caregivers, we want to hear from you, too!

This year, we are adding a new element to the program, and will call it "Show and Tell," after our children who were so eager to bring a pet, or an artifact, or some other odd thing to school and tell about it. Only this time, you can bring bottles of supplements, or canes, or warm socks, or Zopec devices, or anything else you want to recommend to your fellow PN members. But you don't have to. Just come — we'd love to see you.

Shared files

MNA flyer February 2019 (MNA-flyer-February-2019.pdf)

@jlind

I have a diagnosis of axonal polyradiculoneuropathy, based on EMG tests and office tests. It's not severe at this time, so no medications are taken. Just curious if anyone out there has the same condition and what treatments might be effective. Thanks

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Hi @jlind it must be relieving to not take any medications at this time.

I wanted to share this link in hopes it could be helpful: https://www.patientslikeme.com/conditions/chronic-idiopathic-axonal-polyneuropathy

I also wanted to introduce you to other connect members @johnbishop, @artscaping and @mlmcg as they have experience with different types of peripheral neuropathy.

@jlind How have you been feeling? What are your symptoms?

@jlind

I have a diagnosis of axonal polyradiculoneuropathy, based on EMG tests and office tests. It's not severe at this time, so no medications are taken. Just curious if anyone out there has the same condition and what treatments might be effective. Thanks

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Hi @jlind, I would like to add my welcome to Connect along with Ethan @ethanmcconkey and other members. I'm wondering if we should move your discussion into the following group where you can meet other members with similar symptoms where your post will have more visibility.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I'm tagging @kevinking and @llhodnett who have discussed axonal polyneuropathy in a post and may have some suggestions. Also, I found the following publication that may be helpful.

European Federation of Neurological Societies/Peripheral Nerve Society Guideline on management of chronic inflammatory demyelinating polyradiculoneuropathy: Report of a joint task force of the European Federation of Neurological Societies and the Peripheral Nerve Society — First Revision
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1468-1331.2009.02930.x

I'm hoping you can share your symptoms and any treatments that you have found helpful as Ethan suggests. That will help other members with similar symptoms share what they have found helpful.

I have a diagnosis of axonal polyradiculoneuropathy, based on EMG tests and office tests. It's not severe at this time, so no medications are taken. Just curious if anyone out there has the same condition and what treatments might be effective. Thanks

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