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?

@johnbishop

Is anyone familiar with Norman Doidge and his research work with neuroplasticity? Pretty interesting stuff and may provide some hope for some chronic pain patients. I ordered his book "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity" and I'm hoping if nothing else it will be an interesting read. He has a lot of videos on YouTube if you search on his name + YouTube.

John

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Sigh, it be awhile Jim (@jimhd). I'm only about 1/3 of the way through the book Teresa (@hopefull33250) recommended "Strong at the Broken Places – Voices of Illness, a Chorus of Hope" by Richard Cohen. I like what I've read of that book so far but I sometimes have the attention span of a gnat. I had to put it down but will pick it back up soon. I'm probably going to try to get through the new book as it just arrived this afternoon. I will try to report back at least after I've read a few chapters!
~ John

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@johnbishop

Is anyone familiar with Norman Doidge and his research work with neuroplasticity? Pretty interesting stuff and may provide some hope for some chronic pain patients. I ordered his book "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity" and I'm hoping if nothing else it will be an interesting read. He has a lot of videos on YouTube if you search on his name + YouTube.

John

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Yes, please…a book report.

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@johnbishop

Is anyone familiar with Norman Doidge and his research work with neuroplasticity? Pretty interesting stuff and may provide some hope for some chronic pain patients. I ordered his book "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity" and I'm hoping if nothing else it will be an interesting read. He has a lot of videos on YouTube if you search on his name + YouTube.

John

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Blindsided by Richard Cohen changed my life in a profound way, i.e. Shame. He let me claim my new life with a cane at 58 as mine to own. It was shocking how similar the symptoms are between multiple sclerosis and peripheral neuropathy. I will read anything he writes.

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For my neuropathy friends who live within driving distance of Minneapolis, the Minnesota Neuropathy Association is holding a meeting this Saturday. I've attached a flyer and map if you are interested in attending. If you do attend, please share anything you learned at the meeting with us here on Connect. It may help one of your Connect friends.

Saturday, Februry 24, 1 pm at St MIchael’s in Bloomimgton
Our program will be a Circle of Conversation. We have done this type of program in the past, and it has always been well received. This is your opportunity to share concerns, what works and what doesn’t. We would also ask our members to speak to our group as to what has worked for you. Maybe you have a regimen of natural products that work for you, or you have found a treatment or a device that has helped you. Please bring your ideas, and we will give you the microphone for a couple of minutes to share your story.

Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437

John

Shared files

MNA-flyer-2-18 (MNA-flyer-2-18.pdf)

Directions-to-St-Michaels (Directions-to-St-Michaels.pdf)

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@sabinebloomquist

I’m so glad to have found this group. I broke my back 15 years ago, 8 surgeries later and two implants of nerve stimulator, the second one with 16 leads in my spinal column I’m still in relentless chronic pain. I’m prone to falls, my balance is severely affected. I’m the object of what they call failed fusion surgery, of which I had two. 15 months ago I had a bad fall in the shower and sustained a severe brain trauma. Coma scale 4 for a week. Subdural hematoma, filled half of my brain. Emergency surgery, followed by another to replace the 4 inch hole in my skull with an acrylic plate.
I’m aware that I’m a walking, talking miracle. However, the headaches are debilitating, sensitivity to noise and bright light, instances of slurred speech and memory loss, more balance issues and my back pain is worse than ever. My quality of life sucks and sometimes I wonder if it’s worth trying to carry on. I’m but a shell of who I used to be.
I am useless to my family. Just a subject of constant worry for them. I used to write, but I forget words all the time, it takes me forever to write even this because I know what I want to say but it takes forever to put together a sentence which makes sense. I was condsidered intelligent and eloquent, was fluent in three languages.
I am on Neurontin but can’t take opiates because I developed an addiction. So I’m left to over the counter stuff, which actually works on my headaches if I alternate between ibuprofen, Tylenol, and naproxen. It does nothing for the relentless back pain. I feel I’m at the end of my tolerance and although my family is supportive I know they are tired.
Any advice?

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Thank you for your reply. Yes, I noticed that I frequently forget which language I am speaking, aka mixing up words, especially on a high pain level day. Some of my friends find this very funny…..
I tend to mix words within languages, and/or am I able to remember the correct words in any language.
I recently learned that this is not unusual for having those symptoms, especially considering the extent of the brain injury I sustained.
However, that is the least of it. My neuropathy is through the roof. Does anyone know of any natural remedies for the constant pain?

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@johnbishop

Is anyone familiar with Norman Doidge and his research work with neuroplasticity? Pretty interesting stuff and may provide some hope for some chronic pain patients. I ordered his book "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity" and I'm hoping if nothing else it will be an interesting read. He has a lot of videos on YouTube if you search on his name + YouTube.

John

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I will definitely check this out, since my pain levels went through the roof after my TBI

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i would like to post to this group. I was on at one time but somehow not getting the postings anymore. @annhoov would be my sign in… Thanks for your help. @annhoov

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found out i have neuropathy of my footthen my ankle broke onmetwice this time ive had two surgeries a p!te and screws in.ina cast right now.navent had a chance for neuropathyto be checked.waiting forankle to getbetterwonderwhat troubles neuropathy can cause on footalso have ostioperosis.

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@fonda

i would like to post to this group. I was on at one time but somehow not getting the postings anymore. @annhoov would be my sign in… Thanks for your help. @annhoov

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Hello @fonda, to follow the "LIving with Neuropathy – Welcome to the group" discussion just scroll to the top of the discussion and click on the +Follow link at the bottom of the discussion description. To post to the discussion you can click the Reply button after any post when responding to another post or simply scroll to the bottom and type your post.

I've asked a moderator to remove your personal email address in the above post for your safety to keep your email address private. A safe way to share your email address with another member is to click on their @name which takes you to their profile. Then click the Send Private Message link at the bottom of their profile description.

Thank you for asking and we are looking forward to hearing from you.

John

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@robertjr

found out i have neuropathy of my footthen my ankle broke onmetwice this time ive had two surgeries a p!te and screws in.ina cast right now.navent had a chance for neuropathyto be checked.waiting forankle to getbetterwonderwhat troubles neuropathy can cause on footalso have ostioperosis.

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Hi Robert (@robertjr), I hope your ankle gets better soon. My wife had the same thing happen to her right foot. When we looked at the xray after the surgery it looked like hardware store parts. She had a plate and 7 screws.

Do you just have the neuropathy in the foot with the broken ankle? If it's only in that foot it may be a damaged or severed nerve which can cause neuropathy. The National Institutes of Health has an article that explains it:

Peroneal Neuropathy after Tibio-Fibular Fracture
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309252/

John

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@robertjr

found out i have neuropathy of my footthen my ankle broke onmetwice this time ive had two surgeries a p!te and screws in.ina cast right now.navent had a chance for neuropathyto be checked.waiting forankle to getbetterwonderwhat troubles neuropathy can cause on footalso have ostioperosis.

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Hi John,yes the neuropathy was in my bad foot..Was tested for neuropathy before bad break in ankle,wasgoing to see neurologist about my foot but have to wait right now…Trouble is even after ankle gets better still have neuropathy in foot plus ostioperosis…Alsowonder if this might happen again.

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@robertjr

found out i have neuropathy of my footthen my ankle broke onmetwice this time ive had two surgeries a p!te and screws in.ina cast right now.navent had a chance for neuropathyto be checked.waiting forankle to getbetterwonderwhat troubles neuropathy can cause on footalso have ostioperosis.

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Hi Robert, I'm not sure anyone can answer if it might happen again. Has your doctor suggested any specific treatments or physical therapy to help you?

John

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John,right now foot doctor just removed stitches from surgery,still have plate and screws in.soon might get a boot ,since they dont deal with neuropathy so will make appointment with neurologist soon as foot well enough to check out..right now foot doc said no weighton foot..would you think tne screws and plate will affect whatdoctor can find out..Neuropathy was in middle of foot so must be one of reasons ankle shattered..

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@fonda

i would like to post to this group. I was on at one time but somehow not getting the postings anymore. @annhoov would be my sign in… Thanks for your help. @annhoov

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Hi @fonda, according to your profile you should still be receiving email notices when new messages are posted to this discussion. To receive all notifications about the Neuropathy group, please follow the group. Learn how to follow groups and set your notification preferences here: https://connect.mayoclinic.org/get-started-on-connect/

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Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect – i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

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