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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 cmyrule
cmyrule | @cmyrule | 20 hours ago
In reply to @okaynowwhat "@fred101 I ingest RSO oil 3x / day, about 300mg either in cooking or in capsules...." + (show)
Profile picture for Okay Now What @okaynowwhat

@fred101
I ingest RSO oil 3x / day, about 300mg either in cooking or in capsules. On bad pain days I can double that dose. But, I am also on Neurontin, Lyrica and Cymbalta. Good news on this is I no longer feel pain when I break out in shingles. I even broke my left big toe and it healed solid - never felt any of it.

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@okaynowwhat Wow! I am so sorry!

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jamessaxo | @jamessaxo | 18 hours ago
In reply to @carmennieves "I have PN on both feet that seems to be going up my legs and I..." + (show)
Profile picture for carmennieves @carmennieves

I have
PN on both feet that seems to be going up my legs and I have trigeminal neuralgia on my right side of my face. I will be going on my third infusion of ketamine. Has anyone tried this

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Dear Carmen. I suffered rt side Trigeminal neuralgia some 18 months ago. Caused by playing a lot of sax as an 82 yr old. Dentists found all teeth ok even though gums were painful .
Dr diagnosed trigeminal. . Mine was the middle nerve, maxillary. Prescribed dangerous cabamazepine. Then found turmeric as good with less potential liver damage. By accident all symptoms disappeared
after lifting a 20 kg bar from floor to chest several times every other day. Neck muscles were strained. Jaw muscles are an extension, so they became reconditioned.
Playing sax again. All well. I do now take B12 and turmeric daily.
You might like to try lying on your back and hold your head up to strain neck muscles.
James NZ.
.

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jamessaxo | @jamessaxo | 17 hours ago

Forgot to add, trigeminal neuralgia is when a vertically rising artery on outside of brain is rubbing against the horizontally crossing nerve. The rubbing can be from blood pulsing or jaw movement from playing a wind instrument or both.
Alcohol reduces B12 . B12 makes myelin, that's a fat that coats nerves. Have given up ALL alcohol.
Good luck.
James.

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