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.

Chris Trout, Volunteer Mentor | @artscaping | Jan 25, 2020

Good afternoon @ninac. Welcome to Connect Nina. It is wonderful to greet someone from Hawaii. I lived in Lanikai for several years. Where is Kaeeu? I am unable to find it. Big Island?

Neuropathy is a tough situation to deal with and there are many forms. As patients, our goal is to manage the disease and its symptoms. What were you told about the cause of your Neuropathy if it was not the result of diabetes?

What symptoms bother you the most? There are many forms of neuropathy. As a mentor on Connect, I want to make sure you are introduced to fellow members who can share their experiences that relate to yours. I would like to know a little more about your situation at this time. Will you share some specific medications or treatments that you have tried? Were they effective?

Be safe and protected today. Chris

ninac | @ninac | Jan 25, 2020

Aloha! Messy is near Hilo on the Big Island. I was sent to a Specialist and was diagnosed. Text for Diabetes showed no problems. Doctor thought it could be medications? Beginning to think maybe I should stop any supplements with B complex. I am 72 and just started taking them about 2 months or so before sudden onset of problems. I also take blood pressure and water pills.

helennicola | @helennicola | Jan 25, 2020

Hi @ninac, I was diagnosed almost 2 yrs. ago with ideopathic SFN, I am not diabetic, and my neurologist suggested I take B12 1000 mg. which I took for 3 mo. and then I changed over to a low dose B Complex. I have read that the B vitamins are water soluble so I’m confused about the possible toxicity. My neuro PA told me to stop the B6 (which I tested very slightly high) is only 2mg, and to increase the B12 (which she said I tested slightly low.) My internist claims there is no toxicity associated with either so I continue to take my Bcomplex. What is the dosage of the B’s you were taking? Have you had your levels tested? Helen

Jim, Volunteer Mentor | @jimhd | Jan 25, 2020

In reply to @cwallen9 "It is good to hear the spine stimulator worked for you. What was the new medicine..." + (show)

@cwallen9

Imipramine. It's in the amitriptyline family

cwallen9 | @cwallen9 | Jan 25, 2020

I have read and been told by doctors that a high B6 level can cause neuropathy. I would look into that.

Rachel, Volunteer Mentor | @rwinney | Jan 25, 2020

In reply to @jimhd "@cwallen9 Imipramine. It's in the amitriptyline family" + (show)

Hi Jim

My PCP wants me to try Nortriptyline for added pain relief. I am already weaning off Duloxetine so once that's done, I will start Nortriptyline. We are scraping the bottom of the barrel. I'm going to run this idea past my neurologist as well during my 2/6 visit. Have you Jim, or anyone else, used Nortriptyline and found success? Seems like I'm quite past this drug but, I'm no Dr.

In other news...my blood testing reveals continued high copper levels, which have been high for a year now. Neuro is sending me to a gastroenterologist to rule out any liver problems. Also, I'm below threshold on Aldolase and Alkaline phos. MCV is a little over threshold.

At this point low B12 is supposedly the blame of my SFPN, which has been pretty devastating to my life, therefore, I underestimate nothing.

tigreyes2004 | @tigreyes2004 | Jan 26, 2020

In reply to @rwinney "Hi Jim My PCP wants me to try Nortriptyline for added pain relief. I am already..." + (show)

Hi
I tried Nortriptyline & it did help my pain but I got so constipated from it that I had to stop it. That was the only med that helped me with my pain. I take Gabapentin at a low dose of 500 mg of day. I take 300 mg at night & 100 mg 2 times during the day. That is so that it don't make me so tired. I also take the duloxetine. How come you are trying to get off of it?

Jim, Volunteer Mentor | @jimhd | Jan 26, 2020

In reply to @lorirenee1 "@wilcy @jimhd The reason the insurance companies make you see a psychiatrist before any kind of..." + (show)

@lorirenee1 Interesting. The psychiatrist approved me for the stimulator, knowing that I've been clinically depressed since 2002.

Jim, Volunteer Mentor | @jimhd | Jan 26, 2020

In reply to @rwinney "Hi Jim My PCP wants me to try Nortriptyline for added pain relief. I am already..." + (show)

@rwinney I have tried Nortriptyline but it didn't help the pain. Back in the past I took Amitriptyline for TMJ, and it kicked in quickly. I had been having severe pain in my cheeks and sinuses for a year, most likely due to the stress of working with an abusive boss.

Jim