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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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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@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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@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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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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@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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@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.

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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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@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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@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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@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 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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Do you have name of product and contact info? Thanks

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@sash

Do you have name of product and contact info? Thanks

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. The name is Hemp-AID and it is produced in Calgary Alberta .
The name of the website is sativa group . Anti-inflammatory Product. It comes in a large 8 ounce spray can and It is expensive but a little oil goes a long way. Within about 15 minutes my pain is gone for a very long time!
I hope that it helps with your pain! I swear by it.
Please post how it works for you if you try it so more people can be helped with their nerve pain.

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@suzanne2

Just wanted to offer some information on something that I have found helps me get a better night's sleep. I have neuropathy issues and very bad restless legs. Each has their own issues that contribute to my getting very little sleep at night. I did some research and discovered weighted blanket. They seemed to have given some people a better nights sleep so I invested in one. So glad I did.. Been using it about a month and I am finally getting a solid night's sleep.of 6-8 hours. Before it was 3-4 hors a night. This may be the wrong feed for this information but I am so happy to finally get some rest I wanted to share in hopes it might help someone else.

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I use a weighted blanket, too, and it helps. Ours is also an electric blanket, and I have found that having low heat for just the first hour really helps. Our blanket has dual controls, so my husband doesn't have to be heated in the summer.

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