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?

@waltermc

Thank you for the info. I didn't feel warm & fuzzy about the laser therapy either. The guy I spoke with is a chiropractor and wants $2,200 for a month's treatments (3 times a week) and he recommends 2-3 months worth of treatments. That's a lot of money for something that "might" work.

Jump to this post

My God!!! That's $183 per session. When I checked costs in Tucson they wanted $100 which I thought was outrageous. You could buy a laser set up for a few hundred dollars if you want to try it. Good luck..

REPLY

I have looked into pretty much every treatment available for PN. Chiropractors were notoriously expensive and not covered by most insurance. There are clinics that will do PRP therapy to the tune of eight or nine thousand per treatment with no guarantee and HBOT therapy at a few hundred a treatment and no guarantee. One of these days someone may (in my lifetime) develop a treatment to heal the nerves but I am not betting on it. There are too many charletins willing to take your money. When a reputable medical institution (Mayo, Cleveland Clinic, Hopkins) come up with a treatment I'll be first in line.

REPLY
@waltermc

Thank you for the info. I didn't feel warm & fuzzy about the laser therapy either. The guy I spoke with is a chiropractor and wants $2,200 for a month's treatments (3 times a week) and he recommends 2-3 months worth of treatments. That's a lot of money for something that "might" work.

Jump to this post

I don't have to ask my Chiropractor friend. I know what he would say as he shook his head.

REPLY
@johnnyb

My God!!! That's $183 per session. When I checked costs in Tucson they wanted $100 which I thought was outrageous. You could buy a laser set up for a few hundred dollars if you want to try it. Good luck..

Jump to this post

Included in the sessions were some using a magnashpere (sp?), and a couple of lower back adjustments. I just can't justify the costs not knowing if there would be any benefit.

REPLY
@luannfuller

Exactly two years ago I was in the ICU and in a coma. The whole hospital/rehab stay was 2 months and coma was 2 weeks induced but I do not remember much till about 5 ays prior to getting to come home. I have Hemochromotosis which caused liver disease. We were unaware until one month prior to the hospital stay when I get to my GP for many things including a sudden swollen belly.. WHile in the hospital when I mentally came around I noticed my upper left thigh was numb to the touch and still is. No tingling, pain or sharpness, just completely numb. During rehab at home I noticed my hands were also numb LIKE but I could feel somethings and touch. Then it landed in my feet and lower legs. I also jerk sometimes without meaning to. I was diagnosed with PN and was told it is because my body shut down every organ to keep my heart, lungs, and brain working and that that caused nerve damage….permanent….THEY said! For the last two years I have been concentrating on getting heathly again. I am a walking miracle. Went from a diagnosis of 9 months to live, to the ICU stint, and now I am at at least 10 years till the need of a liver transplant!! I have work hard for this too. Now I am ready to work on the PN. The diagnoses was all I have had done. No special rehab…no whatever else there might be out there. I talked to my GP because I also swell and one ankle is a doozy. I can barely walk at night anymore and I worked hard to get out of the wheelchair! UGH. My GP is running test and so far, so good. My GI is wanting to look at some autoimmune thing I tested weakly positive for during my liver diagnoses. Anti smooth muscle antibody…..whatever that is. lol I am hoping that I give someone a clue that could direct me to the correct fix. Thanks for reading all this info…lol
LuAnn

Jump to this post

Hello LuAnn @luannfuller, welcome to Mayo Clinic Connect. It sounds like you have been through a lot. I like your attitude and wanting to learn as much as you can about your health condition. Being your own advocate for your health is definitely job number 1. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where you will meet others with similar symptoms and your post will have more viability.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I too have neuropathy with no pain, only have the numbness and some tingling. I was diagnosed with idiopathic small fiber peripheral neuropathy a few years ago but have had it for more than 20+ years. The neurologist told me there are no medications or topical cremes, etc. that will help with the numbness. I believe diet is extremely important for those of us with autoimmune diseases, probably a true statement for anyone. ☺ I started my search for eating healthier after reading a book by Dr. Terry Wahls – The Wahls Protocol. She has an interesting story of curing the symptoms of MS but not the disease. If you are interested, you can find more information here: https://terrywahls.com/about/about-terry-wahls/

Can you share a little more about the tests your GI doctor wants to run?

REPLY

Exactly two years ago I was in the ICU and in a coma. The whole hospital/rehab stay was 2 months and coma was 2 weeks induced but I do not remember much till about 5 ays prior to getting to come home. I have Hemochromotosis which caused liver disease. We were unaware until one month prior to the hospital stay when I get to my GP for many things including a sudden swollen belly.. WHile in the hospital when I mentally came around I noticed my upper left thigh was numb to the touch and still is. No tingling, pain or sharpness, just completely numb. During rehab at home I noticed my hands were also numb LIKE but I could feel somethings and touch. Then it landed in my feet and lower legs. I also jerk sometimes without meaning to. I was diagnosed with PN and was told it is because my body shut down every organ to keep my heart, lungs, and brain working and that that caused nerve damage….permanent….THEY said! For the last two years I have been concentrating on getting heathly again. I am a walking miracle. Went from a diagnosis of 9 months to live, to the ICU stint, and now I am at at least 10 years till the need of a liver transplant!! I have work hard for this too. Now I am ready to work on the PN. The diagnoses was all I have had done. No special rehab…no whatever else there might be out there. I talked to my GP because I also swell and one ankle is a doozy. I can barely walk at night anymore and I worked hard to get out of the wheelchair! UGH. My GP is running test and so far, so good. My GI is wanting to look at some autoimmune thing I tested weakly positive for during my liver diagnoses. Anti smooth muscle antibody…..whatever that is. lol I am hoping that I give someone a clue that could direct me to the correct fix. Thanks for reading all this info…lol
LuAnn

REPLY

I made an appointment in about a month at the Novant Health Neurology Specialists in Charlotte. So far my sugar, B12, and a lot of other tests have been done with no results. I had nerve testing done at that same place, but it was a referral from a neurology clinic in Salisbury. Those tests were also normal. My feet mostly burn all the time like I'm walking on a beach barefoot in the July Sun. I'm compiling a list of questions to ask the doctor when I go, and things to be prepared for. Do you folks have any suggestions for questions that have helped you in the past?

REPLY
@waltermc

I made an appointment in about a month at the Novant Health Neurology Specialists in Charlotte. So far my sugar, B12, and a lot of other tests have been done with no results. I had nerve testing done at that same place, but it was a referral from a neurology clinic in Salisbury. Those tests were also normal. My feet mostly burn all the time like I'm walking on a beach barefoot in the July Sun. I'm compiling a list of questions to ask the doctor when I go, and things to be prepared for. Do you folks have any suggestions for questions that have helped you in the past?

Jump to this post

Hi @waltermc, there is another discussion here on Connect that you might be interested in reading through. You will be able to meet other members discussing burning feet syndrome.

Groups > Brain & Nervous System > Burning Feet syndrome
https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

It's good that you are compiling a list of questions to ask at your next appointment. You might get some good ideas from the discussion above.

REPLY

Hello, Neuropathy group members: just wanted to let you know that someone you've gotten to know in this group, @johnbishop, is featured along with two other Mayo Clinic Connect volunteer mentors in a newsfeed post today. The post includes video of John talking about how he found Connect after his diagnosis of small fiber neuropathy, and how he enjoys giving back to others by sharing from his personal experience and research. Please come check out the post, play the videos and make a comment. https://connect.mayoclinic.org/page/about-connect/newsfeed/connect-sharing-strengthens-us-and-others/

REPLY
@waltermc

I made an appointment in about a month at the Novant Health Neurology Specialists in Charlotte. So far my sugar, B12, and a lot of other tests have been done with no results. I had nerve testing done at that same place, but it was a referral from a neurology clinic in Salisbury. Those tests were also normal. My feet mostly burn all the time like I'm walking on a beach barefoot in the July Sun. I'm compiling a list of questions to ask the doctor when I go, and things to be prepared for. Do you folks have any suggestions for questions that have helped you in the past?

Jump to this post

Gabapentin and Lyrica help with my feet burning. When they are wearing off and my next dose is due in an hour or so, my feet/toes start to burn again, and they burn for 1/2 an hour or so until the gaba/lyrica takes effect. We all seem to be a bit different in this complicated condition that we have but it helps me to know what others are doing — I'll try anything. Peggy

Liked by teetee7

REPLY
@pfbacon

Gabapentin and Lyrica help with my feet burning. When they are wearing off and my next dose is due in an hour or so, my feet/toes start to burn again, and they burn for 1/2 an hour or so until the gaba/lyrica takes effect. We all seem to be a bit different in this complicated condition that we have but it helps me to know what others are doing — I'll try anything. Peggy

Jump to this post

Thanks Peggy, I've tried both Gabapentin and Lyrica. Neither helped with my burning, and both screwed with my speech really bad. Like my Dr. said, they both work on your body by screwing with your brain. He didn't like the results either given that, for me at least, they didn't work. Like you though, I'll give anything a try. I've even thought about giving tryrevitive.com a try. It's a full money back including return shipping device.

REPLY
@lisalucier

Hello, Neuropathy group members: just wanted to let you know that someone you've gotten to know in this group, @johnbishop, is featured along with two other Mayo Clinic Connect volunteer mentors in a newsfeed post today. The post includes video of John talking about how he found Connect after his diagnosis of small fiber neuropathy, and how he enjoys giving back to others by sharing from his personal experience and research. Please come check out the post, play the videos and make a comment. https://connect.mayoclinic.org/page/about-connect/newsfeed/connect-sharing-strengthens-us-and-others/

Jump to this post

@johnbishop you rock! I have autonomic neuropathy with voice, balance, bladder, and blood pressure issues, and am especially appreciative of the depth of the research you do in providing links to all kinds of useful information. @lisalucier thanks for sharing John's video!

REPLY

@elizabej, Sorry! I couldn't help myself showing my coffee cup that I purchased in 1965 in Yokuska, Japan. Thank you for the kind words. Connect is my favorite volunteer job. I love helping people learn how to be an advocate for their own health…learn, learn, learn ☺

IMG_2328

REPLY
@lynnejoy

Hi this is my first post so please bare with me . I have got peripheral neuropathy and suffer numb feet and pain in my heels and calves and now I’m getting the pins and needles sensation in my right hand and worry it’s spreading . My GP is not doing much for me , I’m on pregabalin 100mg in a morning and same in the evening . He has just given me an extra tab 50mg to take in between which isn’t doing much to be honest . Iv now read about and been recommended CBD paste and decided I’m going to try this . Just wondered if anyone else has tried it and thoughts on this please ?

Jump to this post

Hello @lynnejoy, welcome to Mayo Clinic Connect. Thank you for posting…it's a good start to advocating for your own health. I have idiopathic small fiber peripheral neuropathy. It's mostly in my ankles and feet and I've had it for 20+ years. I only have the numbness with my neuropathy and that's bad enough. I know it's hard with both pain and numbness. I take over the counter supplements that focus on providing the nerves the nutrients they need. I found the protocol of supplements in a closed Facebook group. It has helped many others with pain and allowed them to taper off of the drugs. That said, there is no cure for neuropathy so it's just treating the symptoms. Even though it's helping me, it may or may not work for you but it's worth the try. If you want more information, you can find it in my earlier post where I shared my story here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

I'm tagging @artscaping to see if she might be able to offer some suggestions that have worked for her.

You mention you have neuropathy. Have you had any neurological examinations or tests?

P.S. — The first post is always the hardest. I'm glad you took the step. Keep asking questions. Learn as much as you can about your health conditions and keep advocating for your health.

REPLY

Hi this is my first post so please bare with me . I have got peripheral neuropathy and suffer numb feet and pain in my heels and calves and now I’m getting the pins and needles sensation in my right hand and worry it’s spreading . My GP is not doing much for me , I’m on pregabalin 100mg in a morning and same in the evening . He has just given me an extra tab 50mg to take in between which isn’t doing much to be honest . Iv now read about and been recommended CBD paste and decided I’m going to try this . Just wondered if anyone else has tried it and thoughts on this please ?

REPLY
Please login or register to post a reply.