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.

steeldove | @steeldove | Mar 7, 2019
In reply to @elained "Dear Ronnie, If your neuropathy is caused by damage to your nerves in your spine, your..." + (show)
@elained

Dear Ronnie,

If your neuropathy is caused by damage to your nerves in your spine, your neurosurgeon/orthopedic surgeon will have some idea if your neuropathy can possibly be improved through more surgery.

I am now 77. My neuropathy (profound and disabling) is not caused by nerve damage in my spine. I did have a compressed nerve in 2016, and the pain was terrible (sciatic type pain down my right leg). A laminectomy on L3/4 completely and immediately stopped the pain, thank goodness.

CAUSE: According to my Immunologist, my neuropathy is caused by my Immune System attacking and damaging my nerves. The irony is that my Immune System is deficient and cannot protect me, adequately, from infection. I have IVIG every four weeks to make my immune system stronger so that I am no longer constantly sick with viral, bacterial and fungal infections.. I'm very grateful for that.

1. Driving. When I asked my neurologist, he said that is my decision, not his! I now wear braces on both legs, and can no longer drive. That is one of the worst losses I've experienced so far.

2 and 3. From my research it seems that most neuropathies cannot be stopped, cured or reversed. The exceptions occur when the neuropathy has a very specific cause that is identified early and then the cause can be eliminated. Early diagnosis is important because usually nerves that are damaged cannot be repaired.

4 and 5. My neuropathy began long before it was diagnosed in 2010. I was stumbling, tiring easily, unable to take long walks, unable to ride a bicycle, and experiencing leg cramping and tingling feet. But I was dealing with so many OTHER health issues that I thought the problems I listed above were just due to being 'out of shape'. By 2010 I had profound neuropathy from my knees down. MY LIMITATIONS: I have 20% of normal physical abilities. I wear leg braces (2016) and walk with a walker (2017.

6. I've had PT 3 times for my legs. It doesn't help, I'm sad to say.

7. Because my neuropathy is profound, the nerves no longer function at all. So I don't have pain in my legs. However, I also have small fiber neuropathy in my skin, which hurts, burns and stings. Even my face, lips, tongue and eyes lids are affected. I take 4200 mg of Gabapentin daily to control that pain.

8. My neuropathy progressed quickly, I think. It started in my legs around 2002 at the same time I had nerve damage to the system that supplies saliva and tears. I take a medication to give me some saliva and tears. I have nerve damage to my bladder (2006) which has no real treatment, skin (2015) for which I take gabapentin, and the latest diagnosis is gastrointestinal neuropathy affecting my esophagus (dysmotility and achalasia) and my small intestine which causes SIBO, small intestine bacterial overgrowth. Achalasia (failure of the valve at the bottom of the esophagus to open properly) is treated with outpatient surgery (which will have to be repeated since) and SIBO is treated with antibiotics and which will return eventually and have to be treated again.

9. Surgery will not help my neuropathy since the nerves are damaged by my Immune System.

My case is an extreme example of immune mediated neuropathy. However about 30% of people with autoimmune/immune disorders have some form of neuropathy.

Hope this helps.

Regards, ElaineD

Jump to this post

@elained I'm really concerned because neuropathy and arthritis seem to be taking over my whole body, but I'm determined to maintain my independence, so I want to address your issue with not being able to drive. After 7 months of not being able to drive, I was able to get (thanks to my daughter!) Kempf digital hand controls, which at the touch of a button, the vehicle reverts to the standard pedals and can be driven by anyone. It's like magic! Check the website http://www.Kempf-usa.com where you can deal directly with CEO Martine Kempf. I think she will work with you on price if you do not have insurance coverage. You can regain your independence! Looking at the photo, the inside ring on my steering wheel is my gas, and the lever on the right is my brake.
REPLY
2 replies
grandmaR | @grandmar | Mar 7, 2019
In reply to @steeldove "@elained I'm really concerned because neuropathy and arthritis seem to be taking over my whole body,..." + (show)
@steeldove

@elained I'm really concerned because neuropathy and arthritis seem to be taking over my whole body, but I'm determined to maintain my independence, so I want to address your issue with not being able to drive. After 7 months of not being able to drive, I was able to get (thanks to my daughter!) Kempf digital hand controls, which at the touch of a button, the vehicle reverts to the standard pedals and can be driven by anyone. It's like magic! Check the website http://www.Kempf-usa.com where you can deal directly with CEO Martine Kempf. I think she will work with you on price if you do not have insurance coverage. You can regain your independence! Looking at the photo, the inside ring on my steering wheel is my gas, and the lever on the right is my brake.

Jump to this post

Thank you for posting this. I been thinking about this if the doctor suggests that I stop driving.
Ronnie

REPLY
Lisa Lucier | @lisalucier | Mar 8, 2019

Hello, members of the Neuropathy group. I know many of you have met @jenniferhunter in the discussions in the Mayo Clinic Connect Neuropathy group and perhaps elsewhere on Connect.

Check out the Member Spotlights and read the latest story about jenniferhunter.
– Meet @jenniferhunter: Where Health and Art Meet https://connect.mayoclinic.org/page/about-connect/newsfeed/meet-jenniferhunter-where-health-and-art-meet/

Be sure to subscribe (+Follow) the About Connect page https://connect.mayoclinic.org/page/about-connect/ and see new member spotlights published every 2 weeks.

REPLY
srey | @srey | Mar 8, 2019

Hi, I am wondering if this group is still active?

REPLY
1 reply
grandmaR | @grandmar | Mar 9, 2019
In reply to @srey "Hi, I am wondering if this group is still active?" + (show)
@srey

Hi, I am wondering if this group is still active?

Jump to this post

@srey
Good morning!
As far as I know, it is still active. I just joined this group. I suppose it is active when someone has something to ask or say??
Ronnie (GRANDMAr)

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 9, 2019

Hello @srey, welcome to Mayo Clinic Connect. @grandmar is right. What makes it active is members sharing treatments, asking questions and supporting each other. At the top of the page and below the discussion on the lower right is a selection Oldest to Newest which is the default. If you change that to Newest to Oldest, you will see all of the posts by members sorted with the newest ones at the top.

Have you been diagnosed with a form of neuropathy? Do you have any questions you would like to ask members?

REPLY
1 reply
elained | @elained | Mar 9, 2019
In reply to @steeldove "@elained I'm really concerned because neuropathy and arthritis seem to be taking over my whole body,..." + (show)
@steeldove

@elained I'm really concerned because neuropathy and arthritis seem to be taking over my whole body, but I'm determined to maintain my independence, so I want to address your issue with not being able to drive. After 7 months of not being able to drive, I was able to get (thanks to my daughter!) Kempf digital hand controls, which at the touch of a button, the vehicle reverts to the standard pedals and can be driven by anyone. It's like magic! Check the website http://www.Kempf-usa.com where you can deal directly with CEO Martine Kempf. I think she will work with you on price if you do not have insurance coverage. You can regain your independence! Looking at the photo, the inside ring on my steering wheel is my gas, and the lever on the right is my brake.

Jump to this post

Hi steeldove,

I did look into hand controls for driving when my neuropathy required me to wear braces. The braces prevent foot drop, but have a steel plate under both feet. So I really can't bend my foot enough for the brakes.

THEN for about 18 months I had a condition that caused me to suddenly fall to the ground (syncope). That's when I had to stop driving. The condition was caused by a side effect of a drug I had taken for 6 years. I stopped taking the drug and I stopped collapsing. But I haven't gone back to driving because by now I need a walker, and would have to manage getting the walker in and out of the trunk. By then I would be exhausted!

Very few people have the level of disability that I have, thank goodness.

Regards, Elained

REPLY
2 replies
srey | @srey | Mar 9, 2019
In reply to @grandmar "@srey Good morning! As far as I know, it is still active. I just joined this..." + (show)
@grandmar

@srey
Good morning!
As far as I know, it is still active. I just joined this group. I suppose it is active when someone has something to ask or say??
Ronnie (GRANDMAr)

Jump to this post

Thank you. I have just joined also. I hope to find some help here with my newly diagnosed sfn. Just reading other people's experiences helps.

REPLY
1 reply
grandmaR | @grandmar | Mar 9, 2019
In reply to @srey "Thank you. I have just joined also. I hope to find some help here with my..." + (show)
@srey

Thank you. I have just joined also. I hope to find some help here with my newly diagnosed sfn. Just reading other people's experiences helps.

Jump to this post

@srey
Welcome!
I am happy to share my experiences, anytime. It is always helpful to know you are not alone. Since we are all individuals, our experiences will be a bit differ but with some of the same underlying similarities.
So ask your questions and share your experiences. You, too, will help someone else.
Ronnie (GRANDMAr)

REPLY
srey | @srey | Mar 9, 2019
In reply to @johnbishop "Hello @srey, welcome to Mayo Clinic Connect. @grandmar is right. What makes it active is members..." + (show)
@johnbishop

Hello @srey, welcome to Mayo Clinic Connect. @grandmar is right. What makes it active is members sharing treatments, asking questions and supporting each other. At the top of the page and below the discussion on the lower right is a selection Oldest to Newest which is the default. If you change that to Newest to Oldest, you will see all of the posts by members sorted with the newest ones at the top.

Have you been diagnosed with a form of neuropathy? Do you have any questions you would like to ask members?

Jump to this post

Thank you John. My specialist is still investigating as I have severe disc degeneration in my neck, but he also suspects SNF. I am wondering if you know whether anyone has developed SNF from this cause. Also do you know of anyone who follows the Protocol system of nutritional support for SNF. I am a big nutritional buff for health as opposed to drugs but as of now I do use tramadol for the worst numbness and tingling, especially at night.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.