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.

Profile picture for artist01 @artist01

@lacy2 . Thankyou, Lacy, for your lovely post. It feels good to receive your kind of understanding. I'm not that good at singing, though.
When I lived in Winnipeg, Canada, my Grade Six music teacher bent her ear to each of us to listen to whether we could sing on key or not. Winnipeg had a huge annual music festival for school children and I REALLY wanted to participate with all my singer friends. The decision was, through my tears, that I could ATTEND the festival, but I was only allowed to move my lips, and not spoil the chance of our class to win in the choir competition.
WELL, I fooled them. I burst into song with the rest of 'em!! And we WON!
HA!!! lol
Warmest regards.
Laurie

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@artist01, Loved your post and spunk! And of Course your group won because of your voice! Way to Go!!! lol

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Profile picture for artist01 @artist01

@jakedduck1 . Please don't get rid of your beloved piano. It's a proud symbol to gently remind you of something very special and important that you were skilled at doing. I haven't gotten rid of all my artist paraphernalia. It's an integral part of who I am. True, it's hidden away in a closet for now because it's a bit painful to look at. I've got three huge paintings of mine hanging in my apartment though, and it makes me feel kinda' good to know that once upon a time....
Maybe if you'll tinkle a few keys and I put some paint on a brush, something magical might happen. Maybe at our joint birthday party, when you're 108 years old and I'm 145 . 🙂
Warm and fuzzy thoughts coming your way. Laurie

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@artist01, Like you with your paintings that remind us of those yesteryears, I've kept several of the hardest sheet music piano pieces I once played as a reminder of those lovely years. I'm all in favor of anyone striving to recapture some magical moments!

Shoot, after 25+ yrs of not knitting, I'm relearning to knit and once again enjoying the pleasure it brings. No intention of trying more complex patterns but the satisfaction of completing some hot pads to keep and share is tempting me toward trying some slipper socks.
Numb, cold hands from P.N. and arthritis in hands had made me skeptical but if I knit for short periods and keep the patterns simple, it is doable!

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Hello everyone! I see some great discussion from @jakedduck1 @sunnyflower and @fiesty76 around the arts and wanted to share this conversation where you can continue sharing more if you'd like in the Just Want to Talk Group.

-Art for Healing:
https://connect.mayoclinic.org/discussion/art-for-healing/

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Profile picture for fiesty76 @fiesty76

@artist01, Like you with your paintings that remind us of those yesteryears, I've kept several of the hardest sheet music piano pieces I once played as a reminder of those lovely years. I'm all in favor of anyone striving to recapture some magical moments!

Shoot, after 25+ yrs of not knitting, I'm relearning to knit and once again enjoying the pleasure it brings. No intention of trying more complex patterns but the satisfaction of completing some hot pads to keep and share is tempting me toward trying some slipper socks.
Numb, cold hands from P.N. and arthritis in hands had made me skeptical but if I knit for short periods and keep the patterns simple, it is doable!

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@fiesty76 Good for you, taking up knitting again after all those years. Wow! The only thing I can knit is my brows! I tried it many years ago, starting with a simple scarf, but the scarf got more and more narrow as I lost my stitches.

I'm so impressed with your saying you used to play very complex piano pieces. That's a wonderful accomplishment and you must be very proud of it. Are you able to remember now, or like our Jake, it's gone from your memory? It's nice that you still have some of your sheet music to remind you of that wonderful, skillful time in your life.
Warmest wishes,
Laurie

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Profile picture for fiesty76 @fiesty76

@artist01, Loved your post and spunk! And of Course your group won because of your voice! Way to Go!!! lol

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@fiesty76 No, Fiesty, I'm pretty sure my monotone was drowned out by all the beautiful sopranos. I still remember the two songs we sung though. Beautiful Dreamer, and Santa Lucia. X0

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Profile picture for John, Volunteer Mentor @johnbishop

Hi Kevin, I wasn't exactly sure what the diagnosis was not able to find much specific information on the Mayo Clinic website. I did a search using Google Scholar (https://scholar.google.com) with your specific diagnosis and it came up with a lot of information. Not sure if it's helpful but you may want to look through the links and see if any of the titles jump out at you:
https://scholar.google.com/scholar
Hope this helps...

John

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Can you tell me if Maximum strength Neuropathy support formula w/alpha Lipoic Acid helps. What does it help?

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Profile picture for straightway22 @straightway22

Can you tell me if Maximum strength Neuropathy support formula w/alpha Lipoic Acid helps. What does it help?

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@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/

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Profile picture for sunnyflower @sunnyflower

Hi Hank/Linda @jesthefactsmon, I have 383 emails in my neuropathy group and some in other groups. So please forgive if this is a repeat. Consumerlab.com is not owned by any drug manufacturers aka Big Pharma. They are an independent company who hires various labs to do studies. They also provide a wealth of information on many subjects besides supplements. I've been very impressed and it takes a lot to impress me! Hope you all are well and thriving. Warmest wishes, Sunny

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@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

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Profile picture for straightway22 @straightway22

Can you tell me if Maximum strength Neuropathy support formula w/alpha Lipoic Acid helps. What does it help?

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@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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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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