1. < Neuropathy
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.

dantic123 | @dantic123 | Feb 3, 2022
In reply to @dantic123 "I thought my youth was running out when at age 60 the pain of neuropathy finally..." + (show)
@dantic123

I thought my youth was running out when at age 60 the pain of neuropathy finally put me down to the point I could not travel the trails anymore. I probably put in over 200 miles in the Beartooth Mountains just 45 miles away. I feel confident that the surgery on my left leg and foot is going to be in a betterment of 50% or better. I have to wait a month and then see if Dr. Jacoby will finish the left leg and foot with a high percentage of success as the right. Family comes first and the hikes with them again will be so rewarding. I suggest anyone wanting to visit with Dr. Jacoby and see if this right for you just look him up in Scottsdale.

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Dr. Jacoby and I visited about the many people with Neuropathy in and around my community who might be a candidate for this procedure. He encourages any calls at 1-480-994-5977. This office is located Scottsdale AZ. Suite 200 . My surgery was done at the North Valley Surgery Center. Mine was an in and out procedure and was glad we stayed a few extra days to enjoy the incredible weather and sites. Hobbling along was limited but transportation in the carts worked out well.

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p9n8 | @p9n8 | Feb 3, 2022

Bruce Kelso. I have and are suffering pain from Neuropathy.
I'm taking vitamin B and other supplements. Exercising every day, seemed to help for a long time.
but not as much now. Pain is getting worse.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 3, 2022
In reply to @p9n8 "Bruce Kelso. I have and are suffering pain from Neuropathy. I'm taking vitamin B and other..." + (show)
@p9n8

Bruce Kelso. I have and are suffering pain from Neuropathy.
I'm taking vitamin B and other supplements. Exercising every day, seemed to help for a long time.
but not as much now. Pain is getting worse.

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Welcome @p9n8, I'm sorry to hear your neuropathy pain is getting worse. I also taking supplements to help my small fiber peripheral neuropathy. I shared my story in the Member Neuropathy Journey Stories: What's Yours? discussion here - https://connect.mayoclinic.org/comment/310341/

Do you mind sharing a little more about your neuropathy diagnosis and how long you've had neuropathy?

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1 reply
dantic123 | @dantic123 | Feb 4, 2022
In reply to @windsorchris "damn, I'm so happy you have a shot at getting back to the mountains. they're waiting..." + (show)
@windsorchris

damn, I'm so happy you have a shot at getting back to the mountains. they're waiting for you.

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thanks and yes!

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athenalee | @athenalee | Feb 4, 2022
In reply to @dbeshears1 "Just wondering if you’ve tried Thorlo thick socks, and if so, how they compare to Bombas?..." + (show)
@dbeshears1

Just wondering if you’ve tried Thorlo thick socks, and if so, how they compare to Bombas? I used to run my races in Thorlos (not the thin socks) I wear old ones I have now as house socks, but they’re getting worn. I love Bomba’s charity matching sock program, but couldn’t easily tell from website how cushioned the heels and toes were - I just saw arch support info.

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Hello, Bombas does have well made cushion socks. Although, I typically wear the gripper socks as the grippers offer padding and I like the way the sort of massage my feet.

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athenalee | @athenalee | Feb 4, 2022
In reply to @emf21 "I found the Bombas slippers to be too expensive at least for us to afford." + (show)
@emf21

I found the Bombas slippers to be too expensive at least for us to afford.

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I understand. I have found that they last very well. I wear them daily and have had my pair for over two years.

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tijeras3-ken | @tijeras3 | Feb 5, 2022
In reply to @windsorchris "damn, I'm so happy you have a shot at getting back to the mountains. they're waiting..." + (show)
@windsorchris

damn, I'm so happy you have a shot at getting back to the mountains. they're waiting for you.

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And for you !

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davelobb12 | @davelobb12 | Feb 5, 2022
In reply to @darlingtondoll "I only take my medical marijuana THC at night because it puts me to sleep (thankfully..." + (show)
@darlingtondoll

I only take my medical marijuana THC at night because it puts me to sleep (thankfully so). I only sleep for about four hours before waking up in pain again, so I take some more and sleep until four AM.

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So far that has been a big help for sleeping. I completely agree!

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1 reply
davelobb12 | @davelobb12 | Feb 5, 2022

I have had this for 3 years now and it’s getting worse with a lot of pain in my feet. Are they any experimental treatments that show any promise?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 5, 2022
In reply to @davelobb12 "I have had this for 3 years now and it’s getting worse with a lot of..." + (show)
@davelobb12

I have had this for 3 years now and it’s getting worse with a lot of pain in my feet. Are they any experimental treatments that show any promise?

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Welcome @davelobb12, Sorry to hear your neuropathy pain is getting much worse now after 3 years. The only fairly new one I'm aware of that shows some promise is the clinical trial for WST-057 (4% pirenzepine free base monohydrate) from WinSanTor.

"Treating Peripheral Neuropathy
The hope is that these new findings support the potential for select anti-muscarinic drugs already on the market, like pirenzepine, to be repurposed as a possible preventative, and even treatment, for the clinical effects of peripheral neuropathy, which, for patients, has been largely been a matter of pain relief, and associated with significant health care costs." — Blocking Anti-Muscarinic Drugs May Reverse PN: https://winsantor.com/anti-muscarinic-drugs-may-reverse-peripheral-neuropathy/

WinSanTor’s lead compound, "Treating Peripheral Neuropathy
The hope is that these new findings support the potential for select anti-muscarinic drugs already on the market, like pirenzepine, to be repurposed as a possible preventative, and even treatment, for the clinical effects of peripheral neuropathy, which, for patients, has been largely been a matter of pain relief, and associated with significant health care costs." — Blocking Anti-Muscarinic Drugs May Reverse PN: https://winsantor.com/anti-muscarinic-drugs-may-reverse-peripheral-neuropathy/

WinSanTor’s lead compound, WST-057 is the topical containing pirenzepene – https://winsantor.com/pipeline/
More info on the Phase 2 clinical trial page – https://clinicaltrials.gov/ct2/show/NCT04005287 is the topical containing pirenzepene – https://winsantor.com/pipeline/
More info on the Phase 2 clinical trial page – https://clinicaltrials.gov/ct2/show/NCT04005287

Have you made any lifestyle or diet related changes to see if they might provide a little relief?

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