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.

babyzella | @babyzella | Oct 21, 2022

In reply to @babyzella "Hello I’m Joyce" + (show)

Testing for my lung cancer or my neuropathy

rpenn | @rpenn | Oct 25, 2022

does anyone out there have have tshds antibody and Igm monoclonal gammopathy causing small fiber neuropathy

rpenn | @rpenn | Oct 25, 2022

my name is robert and i have a small fiber neuropathy caused by an Igm monoclonal protein in the blood and tshds antibody . does anyone else out there have this i would like to talk to you

aquamarine4220 | @aquamarine4220 | Oct 26, 2022

In reply to @johnbishop "Hi @cim37343, Welcome to Connect. Thank you for sharing your post. I have no medical training..." + (show)

wow, never heard anything about alcohol and neuropathy. I have neuropathy bad, but never liked alcohol. I have 2 ex alcoholic husbands, wonder how they are doing. Probably after a few ice tea glasses of scotch, they most likely feel no pain.

I cannot even wear shoes mine is so bad. House slippers only. I wish I didn't have it and that they both had huge ugly warts on their noses (my mother always said that!! In fun)

glokart1957 | @glokart1957 | Oct 26, 2022

I quit Gabapentin because of “weird” issues but had to go back on it because the pain was getting too bad again. But now I am having ringing/static in my ears. Anyone else have this side effect from Gabapentin?

John, Volunteer Mentor | @johnbishop | Oct 26, 2022

In reply to @glokart1957 "I quit Gabapentin because of “weird” issues but had to go back on it because the..." + (show)

Hi @glokart1957, There is another discussion on gabapentin side effects that may be helpful here:
-- Gabapentin side effects:
https://connect.mayoclinic.org/discussion/gabapentin-side-effects-2/

Have you discussed possible alternatives to gabapentin with your doctor?

Leonard | @jakedduck1 | Oct 26, 2022

@glokart1957
I was curious how long you took Gabapentin before you quit because of side effects?
Are you having those same weird issues this time around?
How long have you been on it this time?
Jake
Jake

shara | @shara | Oct 26, 2022

Hello,
I have peripheral neuropathy. The doctor who diagnosed this had no explanation for why. She simply said it was pn and progressive. Start with low dose of gabapentin.
I feel that there has to be a reason and have considered trying to go to Mayo Clinic.
I also have high B/P and take lisinopril and spironolact.
A research dr. In Stanford has written a article as to possible causes and mentions the above.
It is getting worse and trying to find a cause gives me hope.
Thank you for this blog,
Shara

John, Volunteer Mentor | @johnbishop | Oct 27, 2022

In reply to @shara "Hello, I have peripheral neuropathy. The doctor who diagnosed this had no explanation for why. She..." + (show)

Hello @shara, Welcome to Connect. I'm sorry to hear your neuropathy symptoms are getting worse. I do congratulate you on researching and learning as much as you can about your condition and possible treatments. I have idiopathic small fiber peripheral neuropathy and shared my story in another discussion here -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.

Not sure if you have seen these two websites which are my favorites for learning more about neuropathy:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Can you share a little more about your symptoms and the tests used for your diagnosis?

johnmacc | @johnmacc | Oct 27, 2022

In reply to @shara "Hello, I have peripheral neuropathy. The doctor who diagnosed this had no explanation for why. She..." + (show)

Hi Shara, my name is Johnmacc. I too have PN since approx. 2015. I tried several meds and settled on Gabapentin low dose. Over the years the pain in my feet has gotten more and more intense and my primary has increased my dose all the way up to 3600 mg daily split over 4 time frames. I still do various tests to find root causes and will never stop learning.