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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.

Guythomas | @gthalbrooks | May 30, 2022
In reply to @johnbishop "My only experience was listening to a speaker who was part of the design team talk..." + (show)
@johnbishop

My only experience was listening to a speaker who was part of the design team talk with our Minnesota Neuropathy Association in July of 2017. Here are my notes from the meeting:

“Walkasins Helped Me Walk Again” — Report from a patient with diabetic peripheral neuropathy

Dr Lars Oddsson, who first spoke to us in January 2016 shared the story about Walkasins, the first wearable sensory prosthesis to help balance and mobility in individuals with peripheral neuropathy. Sole inserts measure foot pressure and gentle tactile vibrations provide balance cues around the lower leg.

More information is available on their website: http://rxfunction.com/

John

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John,
Thanks for your prompt reply. I’ve read everything they have on their website. They did a clinical trial a couple of years ago involving 87 people at locations at U. of MN., Harvard, John’s Hopkins, and Baylor. Most experienced some improvement. They’ve submitted to FDA but not yet been approved. I plan to ask my neurologist about it in July. If you learn any more, please let me know, and I’ll do the same. Thanks again,
Tom

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lecowing | @lecowing | May 31, 2022
In reply to @gthalbrooks "John, On the Foundation for PN site in their alternative treatments I found Walkasins for helping..." + (show)
@gthalbrooks

John,
On the Foundation for PN site in their alternative treatments I found Walkasins for helping balance and gait and preventing falls. A clinical trial was done with them last year. Have you or anyone else had experience with these Walkasins?
Tom Halbrooks

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In reading the Walkasin maker's material it appears that it may help people who still have feeling above the ankle so they wouldn't help me since I have numbness up to my knees.

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jeanallen | @jeanallen | May 31, 2022

Has anyone tried Tylenol 3 with codeine for pain ? How about cortisone shots do they help?I am also taking Hortizant. 300. Has anyone had any experience with taking this?

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 1, 2022
In reply to @jeanallen "Has anyone tried Tylenol 3 with codeine for pain ? How about cortisone shots do they..." + (show)
@jeanallen

Has anyone tried Tylenol 3 with codeine for pain ? How about cortisone shots do they help?I am also taking Hortizant. 300. Has anyone had any experience with taking this?

Jump to this post

Hi @jeanallen, I think the Tylenol may help with mild to moderate pain from neuropathy according to the Foundation for Peripheral Neuropathy -- https://www.foundationforpn.org/treatments/. Cortisone shots have helped my knee before I had a knee replacement done but I'm skeptical that they would help for neuropathy.

@7797 has mentioned Horizant in another discussion and may be able to share some information.

Has your doctor or neurologist offered any suggestions?

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1 reply
fala | @fala | Jun 2, 2022

I have had Neuropathy for many years. Yes, it is progressive, but I did NOT expect this intense hand pain! I can still function with the pain in my feet. But, now the pain is over the top in my my hands and I need as many good ideas as I can get. I have a family event this weekend. ( Yikes) It is out of town, a "Celebration of Life" for my Brother-in-Law (who passed during Covid .) I am the only sister, but can I go? My hand pain has became so severe that I just shake then all day long to defer the pain. (Sounds crazy) I had acupuncture yesterday and it helped a bit ( which is HUGE!).... so I am going again today. I take CBD and over the counter pain pills, but it isn't cutting it. Any ideas? I live alone so I must function! I have a new Dr's appointment tomorrow where I could ask for a prescription, if I get a name of something to help the circulation. Not many Doctors know anything about PN in my area! Please help! Thank you!

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 2, 2022
In reply to @fala "I have had Neuropathy for many years. Yes, it is progressive, but I did NOT expect..." + (show)
@fala

I have had Neuropathy for many years. Yes, it is progressive, but I did NOT expect this intense hand pain! I can still function with the pain in my feet. But, now the pain is over the top in my my hands and I need as many good ideas as I can get. I have a family event this weekend. ( Yikes) It is out of town, a "Celebration of Life" for my Brother-in-Law (who passed during Covid .) I am the only sister, but can I go? My hand pain has became so severe that I just shake then all day long to defer the pain. (Sounds crazy) I had acupuncture yesterday and it helped a bit ( which is HUGE!).... so I am going again today. I take CBD and over the counter pain pills, but it isn't cutting it. Any ideas? I live alone so I must function! I have a new Dr's appointment tomorrow where I could ask for a prescription, if I get a name of something to help the circulation. Not many Doctors know anything about PN in my area! Please help! Thank you!

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Hi @fala, I'm sorry to hear you are having so much pain in your hands. Hand pain has a lot of causes and neuropathy is only one. Here are some other possible causes --- What’s Causing My Hand Pain?: https://www.healthline.com/health/hand-pain.

Hopefully you will get some answers and something that helps at your doctors appointment tomorrow.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 2, 2022

Upcoming Foundation for Peripheral Neuropathy webinar...

FPN Webinar: Anti-MAG Peripheral Neuropathy: An Overview with Dr. Richard Lewis, MD
Mon, Jun 27, 2022 12:00 PM - 1:00 PM CDT

Anti-MAG peripheral neuropathy (Immunoglobulin M(IgM) Anti-Myelin Associated Glycoprotein Peripheral Neuropathy) is a rare autoimmune variety of peripheral neuropathy. In this type of PN, a person’s own immune system attacks cells that are specific in maintaining a healthy peripheral nervous system. As these cells are destroyed by antibodies, they lose function and create problems in both sensory and motor function.

FPN is pleased to welcome Dr. Richard Lewis, MD from Cedars-Sinai Medical Center to present on this rare form of neuropathy. In this program, Dr. Lewis will provide a scientific overview of anti-MAG PN, from diagnosis to treatment and everything in between. Plenty of time will be allotted for questions from those that are able to join this session live.

Register for the webinar -- https://register.gotowebinar.com/register/7893951851494374670

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jeanallen | @jeanallen | Jun 2, 2022
In reply to @johnbishop "Hi @jeanallen, I think the Tylenol may help with mild to moderate pain from neuropathy according..." + (show)
@johnbishop

Hi @jeanallen, I think the Tylenol may help with mild to moderate pain from neuropathy according to the Foundation for Peripheral Neuropathy -- https://www.foundationforpn.org/treatments/. Cortisone shots have helped my knee before I had a knee replacement done but I'm skeptical that they would help for neuropathy.

@7797 has mentioned Horizant in another discussion and may be able to share some information.

Has your doctor or neurologist offered any suggestions?

Jump to this post

My doctor had given me a sample of Horizant.When she called a prescription in to the pharmacy they said it would be over $500.00 my insurance didn't cover it. I thought I had excellent innsurance Any ideals what could have gone wrong?

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 2, 2022
In reply to @jeanallen "My doctor had given me a sample of Horizant.When she called a prescription in to the..." + (show)
@jeanallen

My doctor had given me a sample of Horizant.When she called a prescription in to the pharmacy they said it would be over $500.00 my insurance didn't cover it. I thought I had excellent innsurance Any ideals what could have gone wrong?

Jump to this post

You could call your insurance company and ask them.

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fala | @fala | Jun 2, 2022
In reply to @johnbishop "Hi @fala, I'm sorry to hear you are having so much pain in your hands. Hand..." + (show)
@johnbishop

Hi @fala, I'm sorry to hear you are having so much pain in your hands. Hand pain has a lot of causes and neuropathy is only one. Here are some other possible causes --- What’s Causing My Hand Pain?: https://www.healthline.com/health/hand-pain.

Hopefully you will get some answers and something that helps at your doctors appointment tomorrow.

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Wow, what a great website!
Thank you so much for sending that site to me. I have a multitude of
ailments, but I also have a pretty good sense of humor
, so I can laugh at myself instead of crying (about half the time)
. I am impressed with some of the exercises that I have also been doing
with my physical therapist. It just reassures me that they are very valuable
and that I need to keep doing them on a regular basis.
I think that site is going to be my new B_I_B_L_E!!
Thank you again, that was very nice of you to take the time.
yes, hoping this Doctor was worth waiting for.
Best wishes,
Laura
Gail
Fala
Hey you
I answer to multiple names....

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