1. < Neuropathy
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Moderator

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.

Profile picture for kenc
kenc | @kenc | Aug 3, 2021
In reply to @johnbishop "@kenc There are a couple of discussions you might find helpful where members are discussion using..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

@kenc There are a couple of discussions you might find helpful where members are discussion using medical marijuana, CBD, etc...

-- Medical marijuana for neuropathy: https://connect.mayoclinic.org/discussion/medical-marijuana-3/
-- CBD oil for Neuropathy: https://connect.mayoclinic.org/discussion/cbd-oil-for-neuropathy/

@artscaping may have some suggestions if you have any specific questions on Cannabis products for neuropathic pain.

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Thank you

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mcd123 | @mcd123 | Aug 3, 2021
In reply to @johnbishop "Hi Cathy @mcd123, Welcome to Connect. Sorry to hear your neuropathy symptoms have gotten worse and..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi Cathy @mcd123, Welcome to Connect. Sorry to hear your neuropathy symptoms have gotten worse and the pain management doctor and your neurologist are not on the same page. You might be interested in the following discussions where members have shared what helps them.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Eliminating Foods for Neuropathy pain: https://connect.mayoclinic.org/discussion/neuropathy-pain-1/

@artscaping, @avmcbellar and other members may have some suggestions for you. Also the Foundation for Peripheral Neuropathy has some complementary and integrative therapies you might find helpful here: https://www.foundationforpn.org/living-well/integrative-therapies/

Have you tried any alternative treatments to see if they might help with your neuropathy pain?

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Has anyone reported good results with acupuncture? At night, I have 2 toes on my,left foot that cause incredible pain. I am just desperate to try to find relief. Also any good reports from CBD or medical marijuana? Thank you for your prompt response yesterday. Much appreciated. Cathy

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3 replies
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Mentor
John, Volunteer Mentor | @johnbishop | Aug 3, 2021
In reply to @mcd123 "Has anyone reported good results with acupuncture? At night, I have 2 toes on my,left foot..." + (show)
Profile picture for mcd123 @mcd123

Has anyone reported good results with acupuncture? At night, I have 2 toes on my,left foot that cause incredible pain. I am just desperate to try to find relief. Also any good reports from CBD or medical marijuana? Thank you for your prompt response yesterday. Much appreciated. Cathy

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@mcd123, I personally have not tried acupuncture. My mother believed it helped her with her painful rheumatoid arthritis and there are a few discussions you might want to read to learn what other members experiences have been.

-- acupuncture or chiropractor for peripheral neuropathy: https://connect.mayoclinic.org/discussion/acupuncture-or-chiropractor-for-peripheral-neuropathy/
-- Acupuncture helpful for peripheral neuropathy (PN)?: https://connect.mayoclinic.org/discussion/acupuncture-helpful-for-pn/
-- Dry Needling or acupuncture: https://connect.mayoclinic.org/discussion/dry-needling-or-acupuncture/

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iampatient | @iampatient | Aug 3, 2021

I am a MS patient with a rare condition called simultanagnosia. I desperately need to reach out to any individuals who may have this condition so I can discuss it with someone who is aware of how it feels living in the world of visual agnosia. My world feels very small and I would love to be able to have discussions about the drawbacks we experience without sympathy,
but by sharing our on hand knowledge with each other.
Is there anyone out there that would like to share their experiences with me?
I also have 24/7 vertigo which came with my last relapse two months ago.

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1 reply
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iampatient | @iampatient | Aug 3, 2021
In reply to @kenc "Has anyone tried any of the Cannabis products to treat chronic neuropathic pain?" + (show)
Profile picture for kenc @kenc

Has anyone tried any of the Cannabis products to treat chronic neuropathic pain?

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MS patient…Cbd spray oil helps my pain in my feet and hands, especially when I go to bed. I have been using it for several years now and it is the only medication that has helped me consistently
over 30 years of nerve pain and pins and needles.
I hope this help with your decision.

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1 reply
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iampatient | @iampatient | Aug 3, 2021
In reply to @mcd123 "Has anyone reported good results with acupuncture? At night, I have 2 toes on my,left foot..." + (show)
Profile picture for mcd123 @mcd123

Has anyone reported good results with acupuncture? At night, I have 2 toes on my,left foot that cause incredible pain. I am just desperate to try to find relief. Also any good reports from CBD or medical marijuana? Thank you for your prompt response yesterday. Much appreciated. Cathy

Jump to this post

MS patient…Cbd spray oil helps my pain in my feet and hands, especially when I go to bed. I have been using it for several years now and it is the only medication that has helped me consistently
over 30 years of nerve pain and pins and needles. I order it from British Columbia, shipping price is higher than most places but it works for me!
I hope this helps with your decision.

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1 reply
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kenc | @kenc | Aug 3, 2021
In reply to @iampatient "MS patient…Cbd spray oil helps my pain in my feet and hands, especially when I go..." + (show)
Profile picture for iampatient @iampatient

MS patient…Cbd spray oil helps my pain in my feet and hands, especially when I go to bed. I have been using it for several years now and it is the only medication that has helped me consistently
over 30 years of nerve pain and pins and needles.
I hope this help with your decision.

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Definitely worth contemplating. Thanks.

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Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Aug 3, 2021
In reply to @iampatient "I am a MS patient with a rare condition called simultanagnosia. I desperately need to reach..." + (show)
Profile picture for iampatient @iampatient

I am a MS patient with a rare condition called simultanagnosia. I desperately need to reach out to any individuals who may have this condition so I can discuss it with someone who is aware of how it feels living in the world of visual agnosia. My world feels very small and I would love to be able to have discussions about the drawbacks we experience without sympathy,
but by sharing our on hand knowledge with each other.
Is there anyone out there that would like to share their experiences with me?
I also have 24/7 vertigo which came with my last relapse two months ago.

Jump to this post

Hello @iampatient, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I see that you have connected with @kenc and shared what helps the pain in your feet and hands. You might find the following discussion on agnosia helpful:

Rather worrying memory/processing symptoms at 23 years of age: https://connect.mayoclinic.org/discussion/rather-worrying-memoryprocessing-symptoms-at-23-years-of-age/

Here is an article you may also find helpful - The neuropsychological rehabilitation of visual agnosia and Balint’s syndrome: https://www.tandfonline.com/doi/full/10.1080/09602011.2017.1422272

Did your doctor or care team provide any suggestions or brain exercises to help?

REPLY
1 reply
Profile picture for iampatient
iampatient | @iampatient | Aug 3, 2021
In reply to @johnbishop "Hello @iampatient, Welcome to Connect, an online community where patients and caregivers share their experiences, find..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @iampatient, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I see that you have connected with @kenc and shared what helps the pain in your feet and hands. You might find the following discussion on agnosia helpful:

Rather worrying memory/processing symptoms at 23 years of age: https://connect.mayoclinic.org/discussion/rather-worrying-memoryprocessing-symptoms-at-23-years-of-age/

Here is an article you may also find helpful - The neuropsychological rehabilitation of visual agnosia and Balint’s syndrome: https://www.tandfonline.com/doi/full/10.1080/09602011.2017.1422272

Did your doctor or care team provide any suggestions or brain exercises to help?

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There was going to be a referral to Canadian Institute For the Blind by my doctor for rehabilitation but since I had simultanagnosia for so long before being diagnosed, I already have been able to conduct my life as a vision impaired person.
My one regret is that I can not find someone, anyone that has the same condition as I have so they are able to relate and discuss what I am going through. I know the condition is rare but I feel there must be someone out there that is looking for the same connection that I seek. And I am hoping that I may find it here!

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1 reply
Profile picture for iampatient
iampatient | @iampatient | Aug 3, 2021
In reply to @iampatient "There was going to be a referral to Canadian Institute For the Blind by my doctor..." + (show)
Profile picture for iampatient @iampatient

There was going to be a referral to Canadian Institute For the Blind by my doctor for rehabilitation but since I had simultanagnosia for so long before being diagnosed, I already have been able to conduct my life as a vision impaired person.
My one regret is that I can not find someone, anyone that has the same condition as I have so they are able to relate and discuss what I am going through. I know the condition is rare but I feel there must be someone out there that is looking for the same connection that I seek. And I am hoping that I may find it here!

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I also have a coping team with positive stategies

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