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.

John, Volunteer Mentor | @johnbishop | Mar 5, 2021

In reply to @straightway22 "Can you tell me if Maximum strength Neuropathy support formula w/alpha Lipoic Acid helps. What does..." + (show)

@straightway22, My own personal opinion is that Alpha Lipoic Acid is a supplement that helps provide nerves cellular nutrition but alone by itself is not really that helpful. I have no experience with Maximum Strength Neuropathy support formula w/alpha Lipoic Acid but others may have tried it so hopefully can provide comments with their experience. Here are a few other discussions you may find helpful.

- Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/
- Different OTC for neuropathy: https://connect.mayoclinic.org/discussion/different-otc-for-neuropathy/
- Does Vitamin B-12 help with neuropathy?: https://connect.mayoclinic.org/discussion/does-vitamin-b-12-help-with-neuropathy-of-the-feet/
- 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/

Hank | @jesfactsmon | Mar 6, 2021

In reply to @sunnyflower "Hi Hank/Linda @jesthefactsmon, I have 383 emails in my neuropathy group and some in other groups...." + (show)

@sunnyflower
Thanks Sunny. You did mention this before but I had forgotten about it. I will check them out to see if they allow a trial membership. If they would let me check it out a bit first I would certainly be more interested. I have a high skepticism ratio but you are really keen on them and I put a lot of stock in what you say so I will take a look at their site. Thanks, and hope all is well, Hank

Hank | @jesfactsmon | Mar 6, 2021

In reply to @straightway22 "Can you tell me if Maximum strength Neuropathy support formula w/alpha Lipoic Acid helps. What does..." + (show)

@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

bill5 | @bill5 | Mar 6, 2021

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

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)

@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

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)

@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.

Valerie | @lacy2 | Mar 7, 2021

In reply to @bill5 "Thank you for the support and info. this group has a ton of information. Recently I..." + (show)

Hello from Canada @bill5 First post of yours I have read and we get lots of emails as you did, fake ones, and it is bad enough getting them for many other things, but to take Mayo's name and say they have found a cure is disgusting and I hope someone gets caught for doing so. Just wondering if you do, can or even want help to come into your home to make some meals etc. I am fortunate as between my husband an I we manage but my daughters prod us into getting some home help... we are so used to doing things ourselves but I can see the day in future when we might need some utside help and my adult chlldren work from home and I think I would rather have a "stranger" ... wishing you all the best and hope someone catches that phoney email sender. J.

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)

@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.

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)

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