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 | Dec 2, 2020
In reply to @fumi "What sort of exercise program works well with idiopathic neuropathy. Does exercising numb and weak body..." + (show)
@fumi

What sort of exercise program works well with idiopathic neuropathy. Does exercising numb and weak body parts extend their usefulness or slow down progression? It is very hard to balance.

Jump to this post

Hello @fumi, Welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy and walking is a little difficult for me. I have an exercise bike that I use several times a day and I also try to do a little walking (emphasis on little for me due to back pain). I'm not sure exercise will slow down the progression but I think it helps you keep up your strength and flexibility so that you are able to keep moving. Balance is also another issue I have so I make sure I get up slowly and wait a few seconds before starting to walk. There are a couple of other discussions you might find helpful.

- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Do you enjoy walking?

REPLY
2 replies
avmcbellar | @avmcbellar | Dec 2, 2020
In reply to @johnbishop "Hello @fumi, Welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy and walking..." + (show)
@johnbishop

Hello @fumi, Welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy and walking is a little difficult for me. I have an exercise bike that I use several times a day and I also try to do a little walking (emphasis on little for me due to back pain). I'm not sure exercise will slow down the progression but I think it helps you keep up your strength and flexibility so that you are able to keep moving. Balance is also another issue I have so I make sure I get up slowly and wait a few seconds before starting to walk. There are a couple of other discussions you might find helpful.

- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Do you enjoy walking?

Jump to this post

Hi @fumi I would also like to welcome you. I agree with John. I have neuropathy and balance issues. Exercise is a benefit for me. It improves circulation and can help with nerve regeneration. It is a slow process but I think exercise can be helpful for neuropathy. Ask your provider if exercise is OK for you.

REPLY
1 reply
Erika | @erikas | Dec 2, 2020
In reply to @greeneyes55 "Has anyone tried a good grade of CBD oil?" + (show)
@greeneyes55

Has anyone tried a good grade of CBD oil?

Jump to this post

@greeneyes55 You mentioned CBD oil for neuropathy. Below I have linked a previous discussion regarding CBD oil and neuropathy. You may want to scroll through the comments.

- CBD oil for Neuropathy https://connect.mayoclinic.org/discussion/cbd-oil-for-neuropathy/

I'm wondering what if any kind of direction providers are giving regarding the use of CBD oil for neuropathy?

REPLY
larrymc | @larrymc | Dec 2, 2020

Hello I've just been diagnosed with anti-MAG peripheral neuropathy. My Neurologist and internet searches say that it is extremely rare. He is talking about getting approval for starting IVIg treatments. Has anyone had experience with this type of neuropathy and or the treatment?

REPLY
2 replies
Leonard | @jakedduck1 | Dec 2, 2020
In reply to @faithwalker007 "I’m sorry, I don’t agree with this assessment. The key with cbd is NOT to feel..." + (show)
@faithwalker007

I’m sorry, I don’t agree with this assessment. The key with cbd is NOT to feel the effects of THC.
The relaxant effects of cbd is possible WITHOUT the cognitive impact of THC.
This is the experience I have found productive. I already have too much cognitive impact with CRPS and don’t need any more from THC. In fact the product you are recommending interfered with my seizures and migraines and gave me severe headaches.
PLEASE be careful recommending THC containing products to anyone.
CBD oil and CBD/THC oil are not the same thing.

But then you did mention the THC in the product so cudos to you.

As a pharmacist, I do not recommend THC products due to the interaction with opioids and disease states.

Jump to this post

@faithwalker007
What type of seizures do you have? Do you have Epilepsy?
Take care,
Jake

REPLY
1 reply
Faithwalker007 (Renee) | @faithwalker007 | Dec 2, 2020
In reply to @jakedduck1 "@faithwalker007 What type of seizures do you have? Do you have Epilepsy? Take care, Jake" + (show)
@jakedduck1

@faithwalker007
What type of seizures do you have? Do you have Epilepsy?
Take care,
Jake

Jump to this post

I have epilepsy and I’ve had seizure activity since I was 14 although my neurologist then never told my parents. I discovered it when I started professional pharmacy school (the first year when I was a junior at university at Laramie). I had my first grand mal seizure in our kitchen and my 4 year old son found me after hearing my head hit the counter and my land on the floor and begin seizing. He then ran to my husband and he called 911.
I barely passed pharmacy school after that because of all the experimentation and reactions to seizure medications over the course of the next two years. But I did it!

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 2, 2020
In reply to @larrymc "Hello I've just been diagnosed with anti-MAG peripheral neuropathy. My Neurologist and internet searches say that..." + (show)
@larrymc

Hello I've just been diagnosed with anti-MAG peripheral neuropathy. My Neurologist and internet searches say that it is extremely rare. He is talking about getting approval for starting IVIg treatments. Has anyone had experience with this type of neuropathy and or the treatment?

Jump to this post

Hello @larrymc, Welcome to Mayo Clinic Connect. I'm hoping that there are others with Anti-MAG Peripheral Neuropathy who will be able to share their experience. There is another discussion on IVIG Infusions that you may find helpful.

- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/

In case you haven't seen these, the Foundation for Peripheral Neuropathy and the GBS/CIDP Foundation both have information on Anti-MAG Peripheral Neuropathy here:
- Anti-MAG: https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/autoimmune-disease/anti-mag/
- Anti-MAG Peripheral Neuropathy: https://www.gbs-cidp.org/variants/anti-mag/
- Immunotherapy for IgM anti‐myelin‐associated glycoprotein paraprotein‐associated peripheral neuropathies: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6457998/

Are you able to share a little more about your symptoms with your anti-MAG peripheral neuropathy?

REPLY
bustrbrwn22 | @bustrbrwn22 | Dec 2, 2020
In reply to @faithwalker007 "I have epilepsy and I’ve had seizure activity since I was 14 although my neurologist then..." + (show)
@faithwalker007

I have epilepsy and I’ve had seizure activity since I was 14 although my neurologist then never told my parents. I discovered it when I started professional pharmacy school (the first year when I was a junior at university at Laramie). I had my first grand mal seizure in our kitchen and my 4 year old son found me after hearing my head hit the counter and my land on the floor and begin seizing. He then ran to my husband and he called 911.
I barely passed pharmacy school after that because of all the experimentation and reactions to seizure medications over the course of the next two years. But I did it!

Jump to this post

@faithwalker007 you are amazing!!

REPLY
1 reply
Leonard | @jakedduck1 | Dec 2, 2020
In reply to @faithwalker007 "I have epilepsy and I’ve had seizure activity since I was 14 although my neurologist then..." + (show)
@faithwalker007

I have epilepsy and I’ve had seizure activity since I was 14 although my neurologist then never told my parents. I discovered it when I started professional pharmacy school (the first year when I was a junior at university at Laramie). I had my first grand mal seizure in our kitchen and my 4 year old son found me after hearing my head hit the counter and my land on the floor and begin seizing. He then ran to my husband and he called 911.
I barely passed pharmacy school after that because of all the experimentation and reactions to seizure medications over the course of the next two years. But I did it!

Jump to this post

@faithwalker007
I'd like to invite you to join the Seizure/Epilepsy discussions. Your knowledge would be helpful to many. I hope you consider joining us.
https://connect.mayoclinic.org/group/epilepsy-2bb359/
Take care,
Jake

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