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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.

Mentor
John, Volunteer Mentor | @johnbishop | 1 day ago
In reply to @arcuri24 "Thanks for those tips. I am assuming that the methylcobalamin is an RX item. I am..." + (show)
@arcuri24

Thanks for those tips. I am assuming that the methylcobalamin is an RX item. I am wondering if you exercise and if it helps.

Jump to this post

Actually it's an over the counter supplement. More information:

"Methylcobalamin (MeCbl), the activated form of vitamin B12, has been used to treat some nutritional diseases and other diseases in clinic, such as Alzheimer's disease and rheumatoid arthritis."
-- Methylcobalamin: A Potential Vitamin of Pain Killer: https://pmc.ncbi.nlm.nih.gov/articles/PMC3888748/

REPLY
jamessaxo | @jamessaxo | 18 hours ago

Arcuri, yes, run 2.5 k every 2nd day. Gym between. Have to as I am 82. Don't think exercise helps.Don't understand RX. Am going this a.m to buy COBALAMIN in tablet form. Run out of expensive spray. Alcohol stops B12 production. Good luck .

REPLY
cecelia19 | @cecelia19 | 18 hours ago
In reply to @heisenberg34 "Ain't it the truth. Like you, I had never heard of neuropathy until about eight months..." + (show)
@heisenberg34

Ain't it the truth. Like you, I had never heard of neuropathy until about eight months ago. I had severe pain in my lower back and buttocks from a ski fall in 2016. I got the pain under decent control until 2021 when it came back with a vengeance, sort of out of the blue. We moved to Delaware in 2023. Had to get new docs for Pain Management and PCP. Had a pain pump implanted after an excellent trial. It did not provide any relief. In July of 2024 I had an EMG that showed neuropathy, aka nerve pain. It wasn't until about November of 2024 that the more insidious symptoms began to show up... pain and tingling in extremities. Now, even walking is problematic. I never felt "old" (I'm 77) until these symptoms showed up. Yes. the pain, tingling and whatever is happening at the moment occupies just about every waking moment of my day. We can only hope and pray(seriously, PRAY) that medicine will be able to find some answers to this plague called neuropathy.

Jump to this post

I've been there so understand how this can eclipse everything else in your life. I'm want to let you know that they are developing meds that block specific sodium channels responsible for peripheral nerve pain. One is on the market already and it is called Journax (Suzetripine) and currently approved for acute post surgical pain. I think it is only a matter of time that it will be used for chronic pain as it has a good side effect profile, especially compared to opiates. Unlike those, this bypasses the central nervous system and acts directly to block signals from peripheral nerves.
Other companies are developing their own. It is the first non opiate pain medication to be approved in twenty years, from my understanding. I am currently taking Gabapentin which is helping a lot but hope to be able to reduce the dose and supplement with Suzetripine when available.

REPLY
1 reply
heisenberg34 | @heisenberg34 | 15 hours ago
In reply to @cecelia19 "I've been there so understand how this can eclipse everything else in your life. I'm want..." + (show)
@cecelia19

I've been there so understand how this can eclipse everything else in your life. I'm want to let you know that they are developing meds that block specific sodium channels responsible for peripheral nerve pain. One is on the market already and it is called Journax (Suzetripine) and currently approved for acute post surgical pain. I think it is only a matter of time that it will be used for chronic pain as it has a good side effect profile, especially compared to opiates. Unlike those, this bypasses the central nervous system and acts directly to block signals from peripheral nerves.
Other companies are developing their own. It is the first non opiate pain medication to be approved in twenty years, from my understanding. I am currently taking Gabapentin which is helping a lot but hope to be able to reduce the dose and supplement with Suzetripine when available.

Jump to this post

Thanks. I have heard a lot about Journyx, both good and bad. Very expensive at the moment. Will be years before s generic version is available.
I am on so many meds, it’s a wonder that I don’t explode(Gabapentin included). Spinal fusion, spinal cord stimulator, pain pump… nothing. The miracles of modern medicine.
Have a great rest of the week.

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