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.

saki | @saki | Jun 8, 2022

In reply to @swartzki "I have small fiber neuropathy, and I have been losing my hair for five years. It’s..." + (show)

I'm not familiar with small Fibre neuropathy, would you please explain it.

John, Volunteer Mentor | @johnbishop | Jun 9, 2022

In reply to @saki "I'm not familiar with small Fibre neuropathy, would you please explain it." + (show)

Hi @saki, Easier to point you to a site to let you read than to explain...

What to know about small fiber neuropathy: https://www.medicalnewstoday.com/articles/small-fiber-neuropathy

A better site to learn from - Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview

bpram | @bpram | Jun 9, 2022

In reply to @margottaylor "I'm a big advocate of leg braces for drop foot. If you are on Medicare good..." + (show)

Medicare paid for mine, but I hate wearing them!

govisri | @govisri | Jun 11, 2022

I have slowly ascending neuropathy for number of years and now with TINNITUS and hearing impairment. Several MRI's, CT Scans, blood tests, tests for SFN were all normal. Gabapentin, Lyrica, prescription topical cremes, alpha lipoic acid, B-complex vitamins didn't do anything. Rejected by Mayo. I was wondering f anybody got tested for infections that affect nerves including PRIONS , CJD, etc that may directly affect nerves but may also induce autoimmune conditions that affect the nerves..

jeanallen | @jeanallen | Jun 12, 2022

Has anyone had problems with insurance not paying for Horizant?Walgreens said my price would be over $500. Can't go there?

John, Volunteer Mentor | @johnbishop | Jun 12, 2022

In reply to @jeanallen "Has anyone had problems with insurance not paying for Horizant?Walgreens said my price would be over..." + (show)

@jeanallen, You may be eligible for a copay card

HORIZANT Copay Savings Card*: https://www.horizant.com/savings
"Eligible patients may receive their first fill of HORIZANT 600 mg or 300 mg for $0. For remaining fills, insured patients may pay as little as $25, and cash patients may pay as little as $75."

jeanallen | @jeanallen | Jun 12, 2022

Thank you.
Have Medicare. drug care is Atena Silver Strip and I have Associated Life.if

1puttman | @1puttman | Jun 12, 2022

Hello! I am Sid Kale from Burlington NC. I am 72 yrs. Old, married for 61 yrs. (To the same woman) live in a CCRC retirement community and play golf three times a week.
I have idiopathic PN which affects my balance significantly. Foot and lower leg numbness has increased. I take 300mg or Gabapentin twice daily. I fear not being able to golf if symptoms continue to worsen.