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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.

jgoodall | @jgoodall | Apr 25 12:06pm
In reply to @dlydailyhope "@jgoodall I am a 54 year old female and have small fiber neuropathy and a huge..." + (show)
@dlydailyhope

@jgoodall
I am a 54 year old female and have small fiber neuropathy and a huge list of other symptoms. Have you tried taking Acetyl L Carnitine and Alpha Lipoic Acid supplements for neuropathy pain? They have helped me some. I started taking them when I was first diagnosed with SFN. Also, do you use lidocaine pain patches (Salonpas is my favorite brand) and capsaicin/CBD nerve pain creams? I do get burning and pain on my feet and face that seems to come and go with flares. It seems many neurologists and doctors don’t really know the cause of many nerve diseases and they play whack-a-mole with us trying different things that don’t work. I do question the toxins in air, water, food, medications (OTC and Rx), and household items, etc. being a source of many diseases that cause nerve damage. It seems we need to detoxify as best as possible to prevent further damage while trying to get relief of current symptoms. Many of the things that might help us feel better won’t come from doctors because they are limited of knowledge beyond prescription medication, diagnostic testing, etc. They know little about diet, nutrition, supplements, holistic medicine, etc.

Jump to this post

Hello,

I have not tried Acetyl L Carnitine and Alpha Lipoic Acid supplements. I will look into them! Thanks!
I learned from the Foundation for Peripheral Neuropathy webinar that since I have non-length dependent small fiber neuropathy, Sjogren's autoimmune disease is the cause of my sfn. I am reaching out to a new rheumatologist who treats Sjogren's and I am hopeful that getting the autoimmune disease under control (if possible) may reduce the sfn. and erythromyelagia burning fire flares too.
My eyes are so dry and I have not been able to get the dryness under control. The opthamalogist has tried EVERYTHING. I even get tears made from my blood serum and that still does nothing. Hopefully, some immunosuppressants will help my entire system. Crossing my fingers that I can get some better relief.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 25 12:12pm
In reply to @jgoodall "Hello, Do I reply to all or just to one person? I am still learning this..." + (show)
@jgoodall

Hello,
Do I reply to all or just to one person? I am still learning this format. If I add specific people does that mean they get a notification that I replied?

I have started to look at the FPN website and it is incredible. Thanks. Again, I would have not known about those resources if I had not found MayoConnect!

I did search for discussions about Sjogren's and erythromyelagia but I did not find a lot. I will try a bit harder! I would be interested in finding another few humans who have the combo of conditions that I have!

Thanks!

Jump to this post

That is a great question @jgoodall, It can get a little confusing trying to follow a discussion sometimes due to replies to a specific member or posting for everyone in the discussion. Here's some information in the Help Center explaining how it works.
--- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

There have been many improvements made to the search function in Connect. Here are the results by typing a term in the search box at the top of any Connect window:

--- "Sjogren's" - https://connect.mayoclinic.org/search/discussions/?search=Sjogren%27s%20%20
--- "erythromyelagia" - https://connect.mayoclinic.org/search/discussions/?search=erythromyelagia
--- "Sjogren's + erythromyelagia" - https://connect.mayoclinic.org/search/?search=Sjogren%27s++%2B+erythromyelagia

REPLY
Leonard | @jakedduck1 | Apr 25 10:43pm
In reply to @eirea "Does anyone know if stem cell therapy has been approved for neuropathy, and if I agree..." + (show)
@eirea

Does anyone know if stem cell therapy has been approved for neuropathy, and if I agree to that treatment at Active integrated medicine in Downingtown, PA, how do I find out if that facility is qualified to use stem therapy for neuropathy?

Jump to this post

@eirea
Why don't you ask your physician about where to go for stem cell therapy treatment and if it's effective. I would trust your doctor and not some potentially fly by night clinic you don't know anything about.
Jake

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