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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.

beckiw814 | @beckiw814 | Sep 22, 2018
In reply to @mihaiotto "Hi I am In Canada for the last few weeks I am developing numbness on the..." + (show)
@mihaiotto

Hi I am In Canada for the last few weeks I am developing numbness on the feet and hands

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@mihaiotto My original neuropathy was in my hands and feet. Neurologist said of no known cause. Recently, this week, had x-rays of cervical spine and they found multi-level arthritis and degenerative disc disease.

You may want x-rays at your next appointment just to see if there is anything going on there.

Just a thought.

REPLY
3 replies
mihaiotto | @mihaiotto | Sep 22, 2018

all you have to do is to be strong, because whatever will be . will be

REPLY
mihaiotto | @mihaiotto | Sep 22, 2018
In reply to @beckiw814 "@mihaiotto My original neuropathy was in my hands and feet. Neurologist said of no known cause...." + (show)
@beckiw814

@mihaiotto My original neuropathy was in my hands and feet. Neurologist said of no known cause. Recently, this week, had x-rays of cervical spine and they found multi-level arthritis and degenerative disc disease.

You may want x-rays at your next appointment just to see if there is anything going on there.

Just a thought.

Jump to this post

I had CT scan and I have a bad neck, but I don t think is from there. I have like tightening and then a release which is giving tingling on the body , that is creating neuropathy

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1 reply
oldkarl | @oldkarl | Sep 22, 2018

@beckiw814 Seems to me that your pain management doc is missing the point that most neuropathy is not a problem of muscles or tendons or bones or joints. Rather, it is usually a problem of nerves, in some form. It may be nerve wires coming apart from each other, or having something eat away the sheath, or something similar. physical therapy can help, but if the problem is in the nerve endings or connections, the PT rarely has any real value. My own neuropathy stems from the nerves in my neck and spine as nodules and spondilitis and other stuff pushes on and tries to destroy the nerves. The neurologist should be able to find that. Of course you may have to go the mayo or somewhere to find a neurologist who can find it.

REPLY
1 reply
beckiw814 | @beckiw814 | Sep 22, 2018
In reply to @oldkarl "@beckiw814 Seems to me that your pain management doc is missing the point that most neuropathy..." + (show)
@oldkarl

@beckiw814 Seems to me that your pain management doc is missing the point that most neuropathy is not a problem of muscles or tendons or bones or joints. Rather, it is usually a problem of nerves, in some form. It may be nerve wires coming apart from each other, or having something eat away the sheath, or something similar. physical therapy can help, but if the problem is in the nerve endings or connections, the PT rarely has any real value. My own neuropathy stems from the nerves in my neck and spine as nodules and spondilitis and other stuff pushes on and tries to destroy the nerves. The neurologist should be able to find that. Of course you may have to go the mayo or somewhere to find a neurologist who can find it.

Jump to this post

@oldkarl Thanks for the information. I am very comfortable and believe in my current neurologist. If he doesn’t do further testing after seeing this report I will definitely go to the Mayo Clinic if necessary.

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 22, 2018
In reply to @beckiw814 "@johnbishop They said to see the pain management doc and that he may want me to..." + (show)
@beckiw814

@johnbishop They said to see the pain management doc and that he may want me to do physical therapy. I am in so much pain today that the thought of exercise or therapy would be too much right now. I am on so many meds for the arthritis, high BP, neuropathy and high cholesterol that it’s rediculous. Physical therapy, the right kind, has to be next. I thought a hot shower would help me today but it didn’t and now I’m exhausted. I am only 51 yrs old and this just stinks. I hAve always enjoyed my gardening but with my left hand so numb and painful I cannot even do that right now.

My mom passed away in July and I have gone downhill since then. Going to counselor for that but not helping much so far. I do like the counselor so I am hopeful.

Thanks,
Becki

Jump to this post

Hi Becki @beckiw814, sorry to hear about your recent loss of your mother. Hoping the counselor can help and liking the counselor is probably a good start. When do you see the pain management doctor? It might be a good idea to take a list of all your medications with you to the appointment and discuss them with the doctor.

If you are able, it would be great to get an update after you meet with the pain management doctor to see if they have any suggestions to help with the treatment.

John

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 22, 2018
In reply to @mihaiotto "I had CT scan and I have a bad neck, but I don t think is..." + (show)
@mihaiotto

I had CT scan and I have a bad neck, but I don t think is from there. I have like tightening and then a release which is giving tingling on the body , that is creating neuropathy

Jump to this post

Hello @mihaiotto, welcome to Connect. Neuropathy can also be caused by a pinched or damaged nerve. Here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
https://www.youtube.com/watch?v=xh3xQ8Fk1-o

Have you seen a neurologist?

REPLY
beckiw814 | @beckiw814 | Sep 22, 2018
In reply to @johnbishop "Hi Becki @beckiw814, sorry to hear about your recent loss of your mother. Hoping the counselor..." + (show)
@johnbishop

Hi Becki @beckiw814, sorry to hear about your recent loss of your mother. Hoping the counselor can help and liking the counselor is probably a good start. When do you see the pain management doctor? It might be a good idea to take a list of all your medications with you to the appointment and discuss them with the doctor.

If you are able, it would be great to get an update after you meet with the pain management doctor to see if they have any suggestions to help with the treatment.

John

Jump to this post

John, I don’t even have an appointment yet. Apparently, a good one lives behind me. 🙂 If I don’t hear from my primary by Monday at noon I will be calling them.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 22, 2018
In reply to @deeinpa "Hi, this is my first post. I have neuropathy in my feet caused by both type..." + (show)
@deeinpa

Hi, this is my first post. I have neuropathy in my feet caused by both type 2 diabetes and chemo therapy in 2015. I've had the numbness & pins and needles for a while now, but something new has started. I get this very painful deep itch in the bottom of my foot. It is not on the skin, it is deep in the tissue. It comes with the pins and needles as well but the maddening itch that cannot be satisfied is new. Does any one else have this crazy issue? Thanks.

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@deeimpa. Oh my goodness. I thought I was the only person that had to deal with this maddening itch in the tissue of the foot. I only had it in my right foot. I tried everything.....hot water, heating pad, ice packs, dragging my foot back and forth across the carpet, and even screamingin frustration. The only thing that ever worked was valium that my friend got me from Mexico. I am not advocating that solution. I was desperate. Finally the itching stopped and now I just have blue/purple feet with numbness, tightness and discomfort. I wish you well on this journey for relief. Please let me know how it goes.

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cyme | @cyme | Sep 22, 2018
In reply to @beckiw814 "@johnbishop They said to see the pain management doc and that he may want me to..." + (show)
@beckiw814

@johnbishop They said to see the pain management doc and that he may want me to do physical therapy. I am in so much pain today that the thought of exercise or therapy would be too much right now. I am on so many meds for the arthritis, high BP, neuropathy and high cholesterol that it’s rediculous. Physical therapy, the right kind, has to be next. I thought a hot shower would help me today but it didn’t and now I’m exhausted. I am only 51 yrs old and this just stinks. I hAve always enjoyed my gardening but with my left hand so numb and painful I cannot even do that right now.

My mom passed away in July and I have gone downhill since then. Going to counselor for that but not helping much so far. I do like the counselor so I am hopeful.

Thanks,
Becki

Jump to this post

Sorry to hear that. I have alot of pain and weakness with my left hand which was my dominant hand and it makes me so tired sometime trying to use my right hand now . My left hand pain and swelling but some days I dont like being ask how I feel becasue I have always been over energetic to now I have no energy

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