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 | Dec 31, 2021

In reply to @cblank017 "Pls message re: the Mega benfototiamine and Optimized Carnatine, where do I get it? Thanks." + (show)

Hello @cblank017, You will notice that we removed your email address from your reply to @pogo to protect your privacy since Connect is a public forum and anyone on the Internet including spammers will have access to the information. Members can easily share contact information including email addresses using the Send a Private Message function of Connect. The Get Started on Mayo Clinic Connect guide has the step by step instructions. You can access the guide by clicking the link in the footer area of any page on Connect. Here is the direct link to the guide -- https://connect.mayoclinic.org/get-started-on-connect/

kbirchem | @kbirchem | Dec 31, 2021

In reply to @fredamm "I'm an 82 year old woman in relatively good health with a mostly positive attitude except..." + (show)

I get laser treatments , vibration treatments. Decompression treatments. I also get massages and acupuncture every week. I have a foot and leg massager. I also have a foot spa that heard and bubbles the water . I use a balm of magnesium lotion and Mary jands salve. It is a combination of 70 % thc and 30 % cbd . It all helps.

titansofideastookevindshort | @titansofideastookevindshort | Dec 31, 2021

Vitamin c for dissolving any blockages in bloodstream while avoiding sugar and drinking chicken broth instead for instant energy.. realize if you've had a car accident or impact injury, you will have calcium crystals jammed into cells and would have had bruising..feet are usually show a $4 pet laser over feet about 12 seconds. Deep enough penetrating to melt fats and let blockages loose if you walk right after that..usual cause of diabetic circulation problem that has nothing to do with it.. also realize you can't drink electrolytes where too much..causes cramping, spinal feedback when dehydrated..the cause of epileptic fits. .and easily fixed with proper electrolytes usage only every 3rd or 4th day a bottle. Have home water checked too.. and heavy metal check like lead solder in plumbing meetings? emt experience, 28 years married to medical transcriptionist Specializing in physics, that gives the answers, fixed own health and took care of daughter, 28 years anemia.. can be fixed in a week by diet, blood disorders/no longer a need for chemo.. same with all cancers and proven.. and just need doctor verification but already people proven..

John, Volunteer Mentor | @johnbishop | Dec 31, 2021

In reply to @titansofideastookevindshort "Vitamin c for dissolving any blockages in bloodstream while avoiding sugar and drinking chicken broth instead..." + (show)

Welcome @titansofideastookevindshort, Thanks for sharing your experience and what has helped. Do you mind sharing a little more about your diagnosis, do you have a type of neuropathy?

theodore1238 | @theodore1238 | Dec 31, 2021

Theodore is my name, with long-standing peripheral neuropathy affecting mostly my legs, and looking for helpful information.

John, Volunteer Mentor | @johnbishop | Dec 31, 2021

In reply to @theodore1238 "Theodore is my name, with long-standing peripheral neuropathy affecting mostly my legs, and looking for helpful..." + (show)

Welcome Theodore @theodore1238, I've had small fiber peripheral neuropathy for 20+ years or more but only started worrying about it and was diagnosed in 2016. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/

The two best sites I've found for learning more about neuropathy have helped me considerably.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

One thing that helps me a lot with the feet are really comfortable shoes. Mostly I wear the memory foam Sketchers. I also make sure that I keep my legs moisturized with a good skin lotion.

Have you been diagnosed or started any treatments for your neuropathy?

Leonard | @jakedduck1 | Dec 31, 2021

In reply to @titansofideastookevindshort "Vitamin c for dissolving any blockages in bloodstream while avoiding sugar and drinking chicken broth instead..." + (show)

Forgive the interruption and for going off-topic.
This post is intended to be informational only. I certainly don't expect everyone to be up to date on current Epilepsy terminology. But as a person with Epilepsy (Not an “Epileptic”) I'd like to briefly discuss a couple of words that were mentioned earlier related to Epilepsy. The words “fits” and “Epileptic.”
The word “fits” is inaccurate and has negative connotations as does “Epileptic” since it is a defining and stigmatizing label. A great number of people find these words offensive who have the condition. Additionally, “fits” describes only convulsive seizures which only account for 25% of all seizures.
Thank you for your understanding,
Jake

theodore1238 | @theodore1238 | Jan 1, 2022

In reply to @johnbishop "Welcome Theodore @theodore1238, I've had small fiber peripheral neuropathy for 20+ years or more but only..." + (show)

I was diagnosed in the nineties but only during the last 5 years it has gotten difficult, meaning only short 20-30 minute walks, lots of numbness up to my knees but no pain. Six months ago I was examined again by neurologists who confirmed my case but offered nothing as remedies. I am looking for any basic exercises and/or external physical or medicinal applications to improve or at least slow down the neuropathy. Thanks.

John, Volunteer Mentor | @johnbishop | Jan 1, 2022

In reply to @theodore1238 "I was diagnosed in the nineties but only during the last 5 years it has gotten..." + (show)

@theodore1238, My neurologist basically told me the same thing, there's nothing he can do to help with the numbness and said just to call if it gets worse. That's what brought me to Connect and searching for what coud help. The Foundation for Peripheral Neuropathy has some information on exercises that might be helpful here -- https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

They had a webinar on May 21, 2021 you might find helpful also.
https://youtu.be/4TBKbUWE7N4

titansofideastookevindshort | @titansofideastookevindshort | Jan 1, 2022

In reply to @jakedduck1 "Forgive the interruption and for going off-topic. This post is intended to be informational only. I..." + (show)

You're trying to focus by redirection to find fault with observations when they aren't wrong..to draw attention away from the facts that are right.. there is NO category where one label fits all, just listing contributing possibilities that the individual can consider, each individual has different conflicting illnesses and ALL illnesses have effects between each other and change appearances of each illness which is determined by nutrition and amount of exercise and environmental exposure..