Living with Neuropathy - Welcome to the group

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.

@johnbishop

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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Yes all the usual suspects like Vit B and Alpha Lipoic Acid…I swim to get some exercise but getting harder to walk as time goes on. THC helps me sleep at night but I need relief during the day. Very discouraging!

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Has anybody heard of stem cell treatment or anything for help?

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@davelobb12

Has anybody heard of stem cell treatment or anything for help?

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I've not read about any successful treatment using stem cells to help neuropathy although there are a lot of stem cell clinics waiting to take your money for a lot of false hope (just my non medical opinion). Here's a discussion where members have talked about the topic.

Stem Cell Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

Have you looked into stem cell therapy for neuropathy?

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Hi, I had slight numb feeling about 20 years ago from diabetes in my feet but was not too bad i could handle it.Now dx with Multiple Myeloma almost 3 years now my feet feel like they are shrink wrapped tight. and the numb feeling is much worse I want to cry everyday! I take only Revlimid and no other symptoms just numb feet with no pain. I'm so afraid one day I will not feel them at all!!

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@ancopau1998

Hi, I had slight numb feeling about 20 years ago from diabetes in my feet but was not too bad i could handle it.Now dx with Multiple Myeloma almost 3 years now my feet feel like they are shrink wrapped tight. and the numb feeling is much worse I want to cry everyday! I take only Revlimid and no other symptoms just numb feet with no pain. I'm so afraid one day I will not feel them at all!!

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Hi Angie, I have numb feet also. I find that massaging my feet daily with a mositurizing lotion makes them feel better. I also have to wear compression socks daily to prevent swelling in my legs so my feet always feel shrink wrapped. There is another discussion you might like to join in to read what others with similar symptoms have shared:
-- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

You mentioned diabetes as the cause. Have you made any changes to help with your diabetes?

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@govisri

It would be great if you can provide more details about the doctor in Scottsdale and the surgery procedure. Thanks.

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I would also like more details of procedure and any other helpful information.

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@johnbishop

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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What do you take for pain, I've been taking Tylenol 500's but they are hard on you're liver. Looking for a safer alternative.

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@johnbishop

Hi Angie, I have numb feet also. I find that massaging my feet daily with a mositurizing lotion makes them feel better. I also have to wear compression socks daily to prevent swelling in my legs so my feet always feel shrink wrapped. There is another discussion you might like to join in to read what others with similar symptoms have shared:
-- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

You mentioned diabetes as the cause. Have you made any changes to help with your diabetes?

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Hi John thanks for the info. As far as diabetes that is in control. I only had very slight numbness but taking the Revlimid for Multiple Myeloma has made it much worse. I will get the compression socks for sure. Also I do put moisturizer on my feet everyday. I'm going to go to the site now that you sent me! Thanks again!!

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@johnbishop

I've not read about any successful treatment using stem cells to help neuropathy although there are a lot of stem cell clinics waiting to take your money for a lot of false hope (just my non medical opinion). Here's a discussion where members have talked about the topic.

Stem Cell Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

Have you looked into stem cell therapy for neuropathy?

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I have read some things about it being offered in other countries very suspicious... But i just can't understand why there is no hope or medicine for this? There must not be any money in it for God knows who...

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@p9n8

What do you take for pain, I've been taking Tylenol 500's but they are hard on you're liver. Looking for a safer alternative.

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Fortunately I only have the numbness and a little tingling with my neuropathy so I don't have to take anything for pain. The supplements I take have allowed other people to get off of their neuropathy pain meds but each of us is different so it may not work for everyone. I posted my story in another discussion here -- https://connect.mayoclinic.org/comment/310341/

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