1. < Neuropathy
Profile picture for Colleen Young, Connect Director
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.

Profile picture for artist01
artist01 | @artist01 | Mar 6, 2021
In reply to @bill5 "Thank you for the support and info. this group has a ton of information. Recently I..." + (show)
Profile picture for bill5 @bill5

Thank you for the support and info. this group has a ton of information. Recently I have been getting a Email that the heading reads, Mayo has found a cure for neuropathy! If you open there is a product by ( I’m sorry but don’t recall name ) but it discourages me that they use Mayo’s name to advertise there product. I have tried some advertised products, Nerve Renew, the Revitive machine which by the way seemed to be helping a lot then began to fail. I am in a FB group for neuropathy also, numerous have mentioned a product called Nevestra.. I just want to find a way to bring my life back. This is such a crippling thing. I’m a rancher and enjoy outdoor life, but this has taken away that enjoyment and practically chaired me. I force myself to do what I can, I live alone, so I cook my meals and care for the house and my pets. I take in as much as I can handle of my ranch activities. Just keep praying that God will answer my prayers. Bill5

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@bill5 Welcome to our group, Bill! I'm sure you'll find at least some comfort in responses from those who suffer the same issues as you do. Have you had your neuropathy diagnosis for some time?

I've been fighting neuropathy for a while now, and, like you, looking for answers. I was diagnosed with Giant Cell Arteritis over two years ago and became Diabetic as a result of massive doses of Prednisone at the start of the GCA. The neuropathy soon followed.

Stay tuned, Bill. I'm sure others will reply to your post.
Warm regards,
Laurie

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 6, 2021
In reply to @bill5 "Thank you for the support and info. this group has a ton of information. Recently I..." + (show)
Profile picture for bill5 @bill5

Thank you for the support and info. this group has a ton of information. Recently I have been getting a Email that the heading reads, Mayo has found a cure for neuropathy! If you open there is a product by ( I’m sorry but don’t recall name ) but it discourages me that they use Mayo’s name to advertise there product. I have tried some advertised products, Nerve Renew, the Revitive machine which by the way seemed to be helping a lot then began to fail. I am in a FB group for neuropathy also, numerous have mentioned a product called Nevestra.. I just want to find a way to bring my life back. This is such a crippling thing. I’m a rancher and enjoy outdoor life, but this has taken away that enjoyment and practically chaired me. I force myself to do what I can, I live alone, so I cook my meals and care for the house and my pets. I take in as much as I can handle of my ranch activities. Just keep praying that God will answer my prayers. Bill5

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@bill5 if you remember the name of the company or product that is unlawfully using the Mayo Clinic name to make a false medical claim, please send it to me by private message or using this form https://connect.mayoclinic.org/contact-a-community-moderator/
Thank you.

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fiesty76 | @fiesty76 | Mar 7, 2021
In reply to @jesfactsmon "@straightaway22 Hi, have you started taking Maximum strength Neuropathy support formula? If you want to try..." + (show)
Profile picture for Hank @jesfactsmon

@straightaway22
Hi, have you started taking Maximum strength Neuropathy support formula? If you want to try it, it does not appear to me to have anything harmful in it. It will either help you or not. After the first bottle, if you have not gotten any benefit, just move on. It has a few of the things my wife takes for her neuropathy, i.e. lipoic acid, benfotiamine, acetyl l carnitine, b12, turmeric and others. Of these, she has noticeable benefits from her turmeric (curcumin) supplement more than some of the others, but some people swear by lipoic acid (we take r lipoic acid), b12, it's kind of all over the map depending on the person, just like everything involving neuropathy. It also contains some herbs such as feverfew, skullcap, and others, which might be good, I do not know. The question I would have would be to the quality and source of each different component, which is why we take things individually after researching them. Best, Hank

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@jestfactsmon, I think your last sentence is so important. I only wish I'd thought to research "the only new med prescribed" when my earlier nausea, appetite and wt loss began. It didn't dawn on my doc either that the "new med" could be the culprit.

After a horrid bout of Diverticulitis, I kept a diary of foods slowly re-introduced into my diet. I'd add one raw or cooked veggie to the diet each week so when I had a flare up, it was easy to recognize brussel sprouts as the culprit. Can eat them now again but I've become a real believer, like you, in trying one new thing at a time.

REPLY
1 reply
Profile picture for rtvin53
rtvin53 | @rtvin53 | Mar 8, 2021
In reply to @jesfactsmon "@straightaway22 Hi, have you started taking Maximum strength Neuropathy support formula? If you want to try..." + (show)
Profile picture for Hank @jesfactsmon

@straightaway22
Hi, have you started taking Maximum strength Neuropathy support formula? If you want to try it, it does not appear to me to have anything harmful in it. It will either help you or not. After the first bottle, if you have not gotten any benefit, just move on. It has a few of the things my wife takes for her neuropathy, i.e. lipoic acid, benfotiamine, acetyl l carnitine, b12, turmeric and others. Of these, she has noticeable benefits from her turmeric (curcumin) supplement more than some of the others, but some people swear by lipoic acid (we take r lipoic acid), b12, it's kind of all over the map depending on the person, just like everything involving neuropathy. It also contains some herbs such as feverfew, skullcap, and others, which might be good, I do not know. The question I would have would be to the quality and source of each different component, which is why we take things individually after researching them. Best, Hank

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Hello All,

I’m just responding to this group. I have watched the posts and learning a lot from them. One post just recently really caught my attention and I cannot seem to locate it for referral. The post was in regards to a packaged supplements of alpha lapoic acid that included multiple variations of pills. It explained the difference for r ala and s alpha lapoic acid to treat progressive diabetic autoimmune neuropathy pain starting with the feet.
I know this post will probably make any sense but if the person who listed it and recalls their posting could you please let me know the name of the manufacturer?

Rod Vahoviak

REPLY
2 replies
Profile picture for straightway22
straightway22 | @straightway22 | Mar 9, 2021
In reply to @fiesty76 "@jestfactsmon, I think your last sentence is so important. I only wish I'd thought to research..." + (show)
Profile picture for fiesty76 @fiesty76

@jestfactsmon, I think your last sentence is so important. I only wish I'd thought to research "the only new med prescribed" when my earlier nausea, appetite and wt loss began. It didn't dawn on my doc either that the "new med" could be the culprit.

After a horrid bout of Diverticulitis, I kept a diary of foods slowly re-introduced into my diet. I'd add one raw or cooked veggie to the diet each week so when I had a flare up, it was easy to recognize brussel sprouts as the culprit. Can eat them now again but I've become a real believer, like you, in trying one new thing at a time.

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The name of the supplement is Nuturna Maximum Strength NEUROPATHY Support Formula

REPLY
2 replies
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athenalee | @athenalee | Mar 9, 2021
In reply to @rtvin53 "Hello All, I’m just responding to this group. I have watched the posts and learning a..." + (show)
Profile picture for rtvin53 @rtvin53

Hello All,

I’m just responding to this group. I have watched the posts and learning a lot from them. One post just recently really caught my attention and I cannot seem to locate it for referral. The post was in regards to a packaged supplements of alpha lapoic acid that included multiple variations of pills. It explained the difference for r ala and s alpha lapoic acid to treat progressive diabetic autoimmune neuropathy pain starting with the feet.
I know this post will probably make any sense but if the person who listed it and recalls their posting could you please let me know the name of the manufacturer?

Rod Vahoviak

Jump to this post

There have been several posts relating to Protocol 525 product (https://solutions2pnpd.com/); https://theprotocol525.com/. I think the original posting was by John. I have not yet taken these, as I want to wait for my first visit to a neurologist. I did do some research which you might find helpful: https://nutritionreview.org/2019/07/r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging/

REPLY
Profile picture for athenalee
athenalee | @athenalee | Mar 9, 2021
In reply to @straightway22 "The name of the supplement is Nuturna Maximum Strength NEUROPATHY Support Formula" + (show)
Profile picture for straightway22 @straightway22

The name of the supplement is Nuturna Maximum Strength NEUROPATHY Support Formula

Jump to this post

Thank you for sharing this. Is it different than the protocol 525? I’m new to having neuropathy issues, so trying to explore what might be best for me and not interact with anti rejection meds...which so many supplements and drugs do.

REPLY
1 reply
Profile picture for poppsy1
poppsy1 | @poppsy1 | Mar 9, 2021

im 69 yr old female Have progressive body pains throught ncluding private parts It has increased last few months Live on my own and to be honest I'm scared. Dr given me pain medication that doesn't help at all ive been treated as a neurotic woman which of which im not. this attitude doesn't help my condition I could scream with the pain every day. I need them to investigate my condition but fear its to late. Im normally a very possotive but this cronich condition has diminished any form of positivity . I cry for help every day sorry to bee morbid but its how I feel.

REPLY
4 replies
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Mar 9, 2021
In reply to @rtvin53 "Hello All, I’m just responding to this group. I have watched the posts and learning a..." + (show)
Profile picture for rtvin53 @rtvin53

Hello All,

I’m just responding to this group. I have watched the posts and learning a lot from them. One post just recently really caught my attention and I cannot seem to locate it for referral. The post was in regards to a packaged supplements of alpha lapoic acid that included multiple variations of pills. It explained the difference for r ala and s alpha lapoic acid to treat progressive diabetic autoimmune neuropathy pain starting with the feet.
I know this post will probably make any sense but if the person who listed it and recalls their posting could you please let me know the name of the manufacturer?

Rod Vahoviak

Jump to this post

Hello Rod @rtvin53, I see you have been a member for a few months but this is your first post so I would like to welcome you to Connect. I'm not sure this is the information you are looking for but most over the counter Alpha Lipoic Acid brands contain both the synthetic (S- ALA) and the active (R-ALA). The R-form of alpha-lipoic acid is the active, natural form. The S-form occurs when alpha lipoic acid is synthetically manufactured, creating both the S-form and the active R-form. If the label doesn't specify R-ALA, then it more than likely is part S-ALA and not as effective for treatment. Here are some good references that provide more information on ALA.

- Alpha Lipoic Acid: http://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid
- Different Forms of Lipoic Acid: What You Need to Know: https://geronova.com/consumers/different-forms-of-lipoic-acid/
- Diabetic neuropathy: Can dietary supplements help?: https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/in-depth/diabetic-neuropathy-and-dietary-supplements/art-20095406

You might also be interested in the following discussions to learn what others have shared:
- Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/
- Diabetic Neuropathy progressing?: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/
- Have you tried the new Protocol 525 product for neuropathy relief?: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

Are you currently taking any supplements to help with your diabetic neuropathy?

REPLY
1 reply
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Mar 9, 2021
In reply to @poppsy1 "im 69 yr old female Have progressive body pains throught ncluding private parts It has increased..." + (show)
Profile picture for poppsy1 @poppsy1

im 69 yr old female Have progressive body pains throught ncluding private parts It has increased last few months Live on my own and to be honest I'm scared. Dr given me pain medication that doesn't help at all ive been treated as a neurotic woman which of which im not. this attitude doesn't help my condition I could scream with the pain every day. I need them to investigate my condition but fear its to late. Im normally a very possotive but this cronich condition has diminished any form of positivity . I cry for help every day sorry to bee morbid but its how I feel.

Jump to this post

Hello @poppsy1, Welcome to Connect. I'm know it's hard when you feel like the doctors aren't listening to you or are ignoring you and it must be especially difficult living on your own. Have you been diagnosed with neuropathy? Are you able to share a little more about you diagnosis and symptoms?

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