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.

grandmaR | @grandmar | May 12, 2019

In reply to @danielad "@grandmar -- Ronnie, John has done very well, in spite of the progression of the neuropathy;..." + (show)

Thank you cfg or those words of encouragement!
Ronnie

grandmaR | @grandmar | May 16, 2019

Good Morning All!

Just wanted to fill you in on what has been going on.
I can't remember where I left off in this saga, so I will fill you in.
Since June, my toes have been feeling numb with limited movement in my right foot and no movement in my right big toe.
I saw my neurosurgeon and a neurologist.
Tests do show that I have significant nerve damage that impacts my spine, but shouldn't be causing all these other issues.
My surgeon suggested I see a vascular doctor that also specializes in the heart.
I already had 2 ultrasound tests done not too long ago.
At that time, the vascular doctor said that things we ok, just some aging issues.
My surgeon did not like that answer so he sent me to another vascular doctor.
This doctor got all my reports.
Apparently the other vascular doctor's tech did a good job with the test, but the doctor DIDN'T do such a good job reading the results or writing the report.
The new doctor said there are issues leading to the right and left leg.
Blood is not going to the heart but backing down into my legs.
This, he said MIGHT be the reason for some of the symptoms.
He is going to do an ablation on each leg (one at a time), this should help.
So, ablation it is.
It sounds different to the ones I've had done on my spine.
For those of you suffering with spinal issues, you might know what I am talking about, killing off the vein (in this instant instead of the nerve).

In addition, I've been seeing a pediatrist.
I now not only have neuropathy, but I also have a dropped foot (or toe), which causes me to trip if I am not aware of my walking.
My big toe 'catches' on the floor and I trip.
This is not good on so many levels, especially since I've had 2 spine surgeries!
Anyway, the doc suggested I get a leg brace.
So, leg brace it is!
This brace is made to help lift my toes when I walk.
It is working well!
I can walk longer when I use it, but my feet swell so much, that I need to get new sneakers.
I can just wear the brace 2-3 hours before my feet feel strangled!
But IT DOES HELP ME WALK FOR A MUCH LONGER PERIOD OF TIME WITHOUT TOO MUCH FATIGUE IN MY LEGS!!

Well, stay tuned for the continuing saga...……..Ronnie and her ailments. What will happen next?????? (lol)

Have a terrific Friday!
Ronnie (GRANDMAr)

John, Volunteer Mentor | @johnbishop | May 17, 2019

I recently saw this informative article on Medical Marijuana on the Foundation for Peripheral Neuropathy's website. I thought it might be helpful for those members looking for more unbiased information.

Foundation for Peripheral Neuropathy – Medical Marijuana for Peripheral Neuropathy
— https://www.foundationforpn.org/2019/05/14/medical-marijuana-for-peripheral-neuropathy/

Chris, Alumni Mentor | @artscaping | May 17, 2019

@johnbishop Thank you John for posting the link to this informative article from a trusted organization. It has been helpful for me. As we struggle to find relief from pain and discomfort, we are sometimes easy prey for those who promote unreliable and ineffective options. Take care of that knee. Chris

chattty | @chattty | May 17, 2019

Hi I’m Cathy and 57 Years of age. I’ve been told I have peripheral neuropathy of which I sincerely believe is wrong. I had diabetes for a few years never out of control, always borderline. I instead believe I got it from the drug levaquin I received in the hospital for pneumonia. It started as soon as I got out of the hospital. Needless to say I have it.i can’t get rid of it and I need to learn to live with it. Which is why I’m here. I think I’m going bonkers I’m in so much pain. Started in my toes then whole feet and almost to my knees. Started in my fingers up my both sides now. I believe it will kill me. That’s all.

chattty | @chattty | May 18, 2019

In reply to @pfbacon "I just found out that my friend's elderly doggie is taking gabapentin - it was prescribed..." + (show)

Hey good for the dog! He can have some of mine as I do t think it’s doing anything for me. I’m on the highest amount one can take.😂😜🤪

John, Volunteer Mentor | @johnbishop | May 18, 2019

In reply to @doneuro "has anyone had hernia repair surgery with neuropathy" + (show)

Hello @doneuro, you may want to post your question in the following discussion where more members with neuropathy will see it.

> Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you scheduled to have hernia repair surgery?

doneuro | @doneuro | May 18, 2019

has anyone had hernia repair surgery with neuropathy

seanivor | @seanivor | May 18, 2019

In reply to @doneuro "has anyone had hernia repair surgery with neuropathy" + (show)

Hi doneuro, I have neuropathy following an inguinal hernai repair with mesh , it very much limits my activity on a daily basis, I take a small dose of cymbalta , just 30mg ,and starting versatis patches next week with the 5% lidocaine.