1. < Neuropathy
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.

Mentor
John, Volunteer Mentor | @johnbishop | Apr 20, 2022
In reply to @danpinc2022 "My name is Dan Powell. I live in the great state of North Carolina. I have..." + (show)
@danpinc2022

My name is Dan Powell. I live in the great state of North Carolina. I have had post op neuropathy since spinal surgery Nov. 12 2021, I was in rehab for 63 days, I have been home for almost 3 months now. I am continuing theopathy with home health care. I have made very little progress. I am in a wheel chair. I have it in both legs and feet. I will ad a photo later. looking forward to hearing from others. Dan Powell

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Hi @danpinc2022, I would like to add my welcome to Connect along with @artscaping and other members. I can't begin to imagine how difficult spine surgery recovery and rehabilitation can be. I would think 3 months is still early in the recovery process but hopefully @jenniferhunter can share her thoughts on the recovery and rehab process. There is an older discussion from 2016 that has posts from 2021 that you might find helpful on spine surgery recovery -- Spinal Surgery: What should I expect?: https://connect.mayoclinic.org/discussion/what-to-expect/

You also might find the following discussion and websites helpful for learning more about neuropathy and available treatments.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/

REPLY
danpinc2022 | @danpinc2022 | Apr 21, 2022
In reply to @artscaping "Good afternoon @danpinc2022 First, let me welcome you to Connect. This is a forum where sharing..." + (show)
@artscaping

Good afternoon @danpinc2022 First, let me welcome you to Connect. This is a forum where sharing is our form of therapy. We all share with each other and by doing that we help others learn about their issues and they help you. It seems like Nov. 2021 was not very long ago. I am sad about your post-op condition And I can truly empathize with the frustrations you are experiencing. Now don't run away, because I have things to share with you. I have had SFN small fiber neuropathy for about five years. And the reason........I have had 14 orthopedic surgeries including three spinal. My last one was cervical and was meant to help the neuropathy in my arms, wrists, and hands. It worked for a while and then the pain, numbness, and tingles came roaring back. So I understand what you mean by "very little progress."

Would you be able to share a little more about rehab? What kind of therapy did you have there? Have your clinicians given you any diagnostic findings? And finally, did you have a diagnostic skin biopsy?

There are quite a few treatments that may help you manage your neuropathy symptoms. There really is no cure as you may already know. Before we start with the options, I want to introduce you to two of my colleagues. @jenniferhunter and @johnbishop. Jennifer has been a Mayo spine patient and has a personal background that supports her extensive knowledge. John can help you with research for current helpful treatments.

And I will be here for you also. Looking forward to the photo.

May you be free of suffering and the causes of suffering.
Chris

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thank you so much for the prompt reply. my rehab consist of walking in a walker, standing as long as I can without holding on, with my eyes closed and open and many exercises to strenghten my legs. I have not had any skin biopsy. I just started LED light treatments ( own my own ) . I will follow up with John and jennifer.

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danpinc2022 | @danpinc2022 | Apr 21, 2022

I had a problem with lymph edema in the past. my edema tech told me i shouldd have an ultrasound on my legs to check my blood flow but my primary never ordered it. Is that something I need to request ?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 21, 2022
In reply to @danpinc2022 "I had a problem with lymph edema in the past. my edema tech told me i..." + (show)
@danpinc2022

I had a problem with lymph edema in the past. my edema tech told me i shouldd have an ultrasound on my legs to check my blood flow but my primary never ordered it. Is that something I need to request ?

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@danpinc2022, I have lymphedema and have to wear compression socks to keep the swelling in the legs down. My cardiologist ordered the lymphoscintigram test as part of the diagnosis. If you are still having swelling in your legs it might be a good idea to have a discussion with your doctor or get a referral to a cardiologist for testing.

Mayo Clinic has some information on the diagnosis & treatment here - https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687

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danpinc2022 | @danpinc2022 | Apr 21, 2022

thank God, no more swelling

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Lynn Brooks | @lbroomayo1 | Apr 26, 2022
In reply to @kbirchem "I was the first patient to receive platelet rich plasma injections in my feet today for..." + (show)
@kbirchem

I was the first patient to receive platelet rich plasma injections in my feet today for neuropathy . At the Fargo Sanford Podiatry department.

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Interesting. What purpose does plasma injections serve in feet? I'm having age related problems with my feet. Toe cramps, toes tingling, and keeping my feet warm. I don't know anything about medical options for aging feet. My feet were always full with a natural high arch. Today they are pancake thin, I hardly recognize them.
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saki | @saki | Apr 28, 2022

I have just joined this group and would be grateful for any information regarding scalp neuropathy. I was not given anything further than the diagnosis and haven't been able to find much more. I only know that there is little feeling in some small areas of my scalp and I'm losing my hair. I'd appreciate any information anyone might have to pass along.

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saki | @saki | Apr 28, 2022

Hi, I'm new to to this group, a senior, I have neuropathy in my left leg that causes me some sharp pain, usually at night in legs (both) and feet and usually brief. My main concern now is scalp neuropathy that was diagnosed more than a year ago and apparently is related to the leg neuropathy. Those symptoms are lack of feeling in some areas and hair rapidly disappearing. I can't find any information about this. Can anyone help? Thanks.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 28, 2022
In reply to @saki "I have just joined this group and would be grateful for any information regarding scalp neuropathy...." + (show)
@saki

I have just joined this group and would be grateful for any information regarding scalp neuropathy. I was not given anything further than the diagnosis and haven't been able to find much more. I only know that there is little feeling in some small areas of my scalp and I'm losing my hair. I'd appreciate any information anyone might have to pass along.

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Welcome @saki, Although I have neuropathy I don't have any experience with scalp neuropathy but did find some information on the topic.

"Can you get neuropathy on your scalp?
Structural changes in scalp epidermal and dermal nerve fibres were discovered in a skin biopsy, suggesting that small-fibre neuropathy associated with scalp pruritus may be a manifestation of the DM syndrome." --- Small-fibre neuropathy in a patient with dermatomyositis and severe scalp pruritus: https://pubmed.ncbi.nlm.nih.gov/27088428/

There are a couple of other sites that might be helpful for learning more and what treatments are available:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

It sounds like you don't feeling any pain or tingling in the scalp, is this correct? Did your doctor suggest or mention any treatments that might help?

REPLY
saki | @saki | Apr 29, 2022

Thank you for responding to my post. Sometimes my scalp is a little sore and itching but there is no actual pain, just a continual loss of hair. My dermatologist didn't offer any further information or suggest any treatment. I got the impression there was nothing to be done. I will check out the links you provided , any information would be helpful.

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