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.

Profile picture for John, Volunteer Mentor @johnbishop

Hi @marksmom, Welcome to Connect. I'm sorry to hear you haven't gotten any relief yet. It's good to hear you have an appointment with a neurologist at Mass General Hospital. Hopefully they can help you with a treatment for the S1 Radiculopathy. From what I've read surgery can help but that might be a question when you have your upcoming appointment.

"Corticosteroid injections reduce pain by suppressing inflammation around the irritated nerve. This is an excellent treatment for L5 or S1 radiculopathy when other conservative, nonsurgical treatments have not worked. There are generally two reasons for surgery. The first is significant weakness, such as a foot drop."
--- Sciatica and radiculopathy: Peculiar names for shooting back, leg pain: https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/sciatica-and-radiculopathy-peculiar-names

Do you have any pain with the right leg and lower back?

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Left leg and back. Excruciating pain

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Profile picture for daphnebattle @daphnebattle

Left leg and back. Excruciating pain

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No. I only have pain in the left leg and left back right and left on neuropathy

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Profile picture for daphnebattle @daphnebattle

No. I only have pain in the left leg and left back right and left on neuropathy

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You might want to write down a list of questions on possible treatments to ask in your upcoming appointment with the neurologist at Mass General Hospital. This site has some good information on how to plan your conversation to get the most from an appointment.

Tools for the visit - https://patientrevolution.org/visit-tools

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Profile picture for John, Volunteer Mentor @johnbishop

Hi @rocketdad, Welcome to Connect. Sorry to hear that you have been dealing with neuropathy and other related issues for 40 years with not much relief. There is a lot of information out there but you really have to do your research and find reliable sources. Here are a couple in case you haven't seen them.

-- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

Are you able to share a little more about your diagnosis and the symptoms that are most bothersome?

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Thank you for your hug!💕🌷

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Hi everyone.
Introduction: my name is Michele. I have stage 4b colon cancer. I am currently doing chemo treatments. I am at my 11th round.
I struggle with neuropathy. It is the worst. I know it is due to the chemo treatment that I receive. My care team recently switched my medication to Duloxetine. It seems to help. I still get random pins and needles in my hands and feet but not as much as before. In a few weeks I am looking to add Gabaplatin to my medicine list.
My husband picked up some nerve cream from walmart that seems to also work. I think with the correct mix of regiments, maybe we can find a solution to this.

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Profile picture for wifemom3 @wifemom3

Hi everyone.
Introduction: my name is Michele. I have stage 4b colon cancer. I am currently doing chemo treatments. I am at my 11th round.
I struggle with neuropathy. It is the worst. I know it is due to the chemo treatment that I receive. My care team recently switched my medication to Duloxetine. It seems to help. I still get random pins and needles in my hands and feet but not as much as before. In a few weeks I am looking to add Gabaplatin to my medicine list.
My husband picked up some nerve cream from walmart that seems to also work. I think with the correct mix of regiments, maybe we can find a solution to this.

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Hi @wifemom3, Have you seen this webinar?

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Profile picture for John, Volunteer Mentor @johnbishop

Hi @wifemom3, Have you seen this webinar?

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This video was very helpful. Thank you

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Hi Im Beth from Montana. I have neuropathy in my lower legs, now increasing in lower left leg—is this related to recent concussions? Left hip pain? Possible spinal involvement? Thanks!

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Profile picture for feedsbirds @feedsbirds

Hi Im Beth from Montana. I have neuropathy in my lower legs, now increasing in lower left leg—is this related to recent concussions? Left hip pain? Possible spinal involvement? Thanks!

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Hi Beth @feedsbirds, Welcome to Connect. There are many causes for neuropathy and it is possibly related to an nerve compression caused by an injury or involving the spine. Only a doctor or neurologist can make the diagnosis. A couple of the best sources for learning more are these sites:

-- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/causes-neuropathy
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/causes/

Have you seen a neurologist or a doctor for your symptoms?

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Profile picture for kevinking kking @kevinking

Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case, that both my legs are weak and sometimes my feet hurt, but there is no known cause of the neuropathy and no known cure.
Sometimes I experience the most foot pain lying in bed. I have been offered gabapentin, but in my experience that drug was not helpful.
I also understand that alcohol may exacerbate neuropathy, so I stoped all alcohol intake; however, I haven't seen any improvement yet.
I had a laminectomy at L4-L5. That had the possibility of easing the neuropathy, but it didn't.
What's next? Don't know.
Kevin

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I’m taking gabapentin and Dulextione and Quetiapine. So far I can sleep but I walk really funny.

I, also, have GERD and optic nerve damage.

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