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.

Jim, Volunteer Mentor | @jimhd | Aug 16, 2020

@otisco. As each of us is unique, you really should get a blood test and speak with your doctor about it. I have sfpn, and blood tests consistently show B is within normal range. Many things can be harmful if dosage is too high.

Jim

Rachel, Volunteer Mentor | @rwinney | Aug 16, 2020

In reply to @otisco "I have peripheral neuropathy - idiopathic sensorimotor axonal neuropathy. How much b12 is recommended daily? Thank..." + (show)

@otisco I have Small Fiber Peripheral Polyneuropathy as a result from B12 deficiency which slowly developed through my forties. Now that I've been regulated through injections, I take oral B12 2,000 mcg per day and a daily B Complex with 30 mcg B6. Too much B6 creates PN, too little B12 creates PN, it's a balancing act, one that your Dr. should be aware of and advise on. Dangerous area. Good luck.

ginger7 | @ginger7 | Aug 29, 2020

I have been diagnosed with small fiber idiopathic peripheral neuropathy. I would appreciate hearing about any experience with immunoglobulin treatments.

John, Volunteer Mentor | @johnbishop | Aug 29, 2020

In reply to @ginger7 "I have been diagnosed with small fiber idiopathic peripheral neuropathy. I would appreciate hearing about any..." + (show)

Hello @ginger7, Welcome to Mayo Clinic Connect. There is another discussion you may be interested in reading and learning what others have shared about IVIG Infustions: https://connect.mayoclinic.org/discussion/ivig-infusions/

@sparshall, @arnrob, @jimhd and others may be able to share their experience with IVIG treatments with you.

Has your doctor recommended the treatments for you?

ginger7 | @ginger7 | Aug 29, 2020

In reply to @johnbishop "Hello @ginger7, Welcome to Mayo Clinic Connect. There is another discussion you may be interested in..." + (show)

Yes.

testudo | @testudo | Sep 3, 2020

Hi, my name is John. I am 67 years old. This is my first post. I have not been diagnosed with Peripheral Neurology (PN). In the last several weeks I have noticed some "burning" sensation on my feet and ankles, particularly when I lie in bed at night. So I went to Dr. Google and it pointed me to PN. I mentioned it to my doctor the other day since he indicated that I have prediabetes. He said to keep an eye on it and he indicated that there is medication for that. Any initial thoughts and comments for a newbie are greatly appreciated. Thank you Colleen and John for moderating this site.

lois6524 | @lois6524 | Sep 3, 2020

would be interesting to know what medication he is referring to: for the PN or for the prediabetes -- ask questions now

testudo | @testudo | Sep 3, 2020

In reply to @lois6524 "would be interesting to know what medication he is referring to: for the PN or for..." + (show)

I have a call into his office to see what medication he was thinking about. Is there a "hallmark" medication that is commonly prescribed?

sunnyflower | @sunnyflower | Sep 3, 2020

In reply to @testudo "Hi, my name is John. I am 67 years old. This is my first post. I..." + (show)

Hello John and welcome to Connect! I am fairly new and still not proficient in getting around but am making progress.

I hope and pray that you learn as much as I 'm learning here on Connect and I know you will receive a great deal of support and encouragement.

Many blessings, Sunnyflower

sunnyflower | @sunnyflower | Sep 3, 2020

In reply to @lois6524 "would be interesting to know what medication he is referring to: for the PN or for..." + (show)

Hello lois6524,
I was thinking the same thing but lost the post. I would say that much better to arrest the pre-diabetic condition as we know there is no medicine to stop the neuropathy. Believe me, I am speaking from experience unfortunately.

Have a blessed day, Sunnyflower 😊