Living with Neuropathy - Welcome to the group

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?

@swiss

have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular in Texas who are authorized to harvest your own fat cells after liposuction and get your own stem cells out of it the same day – these will then be applied IV or IT injection and may repair nerves and other tissues as well as it may reverse the demylielisation into remylielisationialisation damaged peripheral or central nerves, this may be the future of medicine as such as these injected stem cells can change into any type of needed cells.

Jump to this post

Thanks John. I sure appreciate it.

REPLY

Hi @swiss, @sdemaria, @friendyshirley you'll find more information about neuropathy and stem cells in this discussion on Connect:

– Stem Cell Therapy for Neuropathy https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

The short answer: Unfortunately, because of the complexity of the brain and spinal cord, little spontaneous regeneration, repair or healing occurs. Therefore, brain damage, paralysis from spinal cord injury and peripheral nerve damage are often permanent and incapacitating. It is very early days and research in neuroregeneration is ongoing. Beware of charlatans.

REPLY
@sdemaria

GM, yes I've heard about stem cell therapy. However, I never research myself . I would try it for sure.

Jump to this post

it is not covered by insurance….125,000….didn't work

REPLY
@swiss

have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular in Texas who are authorized to harvest your own fat cells after liposuction and get your own stem cells out of it the same day – these will then be applied IV or IT injection and may repair nerves and other tissues as well as it may reverse the demylielisation into remylielisationialisation damaged peripheral or central nerves, this may be the future of medicine as such as these injected stem cells can change into any type of needed cells.

Jump to this post

ivig every 14 days

REPLY
@swiss

have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular in Texas who are authorized to harvest your own fat cells after liposuction and get your own stem cells out of it the same day – these will then be applied IV or IT injection and may repair nerves and other tissues as well as it may reverse the demylielisation into remylielisationialisation damaged peripheral or central nerves, this may be the future of medicine as such as these injected stem cells can change into any type of needed cells.

Jump to this post

chicago is best…expensive

REPLY
@johnbishop

If you live in the Minneapolis – St. Paul area, the Minnesota Neuropathy Association's (http://neuropathy-mn.org/) next meeting should be an interesting one. I'm hoping to attend.

Next Meeting:  Saturday, August 4th at 10 AM
Speaker: William Hoffman of the U of M Medical School
Topic: Stem Cells and Regenerative Medicine: A Revolution Picks Up the Pace

He will discuss what stem cells are and the diseases that cell therapies and regenerative medicine can treat emphasizing their potential for treating neurological disorders. He will review pluripotent (capable of differentiating into one of many cell types) and adult tissue stem cells currently in cell therapy clinical trials. Finally, he will talk about the growing marketplace of direct-to-consumer non-FDA-approved stem cell therapies in the U.S.

Meeting location: 
St. Michael's Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437

Jump to this post

Sounds great, I will be glad to receive your report after this August 4th meeting, thanks for your assistance!

REPLY
@johnbishop

If you live in the Minneapolis – St. Paul area, the Minnesota Neuropathy Association's (http://neuropathy-mn.org/) next meeting should be an interesting one. I'm hoping to attend.

Next Meeting:  Saturday, August 4th at 10 AM
Speaker: William Hoffman of the U of M Medical School
Topic: Stem Cells and Regenerative Medicine: A Revolution Picks Up the Pace

He will discuss what stem cells are and the diseases that cell therapies and regenerative medicine can treat emphasizing their potential for treating neurological disorders. He will review pluripotent (capable of differentiating into one of many cell types) and adult tissue stem cells currently in cell therapy clinical trials. Finally, he will talk about the growing marketplace of direct-to-consumer non-FDA-approved stem cell therapies in the U.S.

Meeting location: 
St. Michael's Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437

Jump to this post

@hopeful33250 there hasn't been any videos of the meetings since I have belonged but if any are available I will post them on the website. John

REPLY
@johnbishop

If you live in the Minneapolis – St. Paul area, the Minnesota Neuropathy Association's (http://neuropathy-mn.org/) next meeting should be an interesting one. I'm hoping to attend.

Next Meeting:  Saturday, August 4th at 10 AM
Speaker: William Hoffman of the U of M Medical School
Topic: Stem Cells and Regenerative Medicine: A Revolution Picks Up the Pace

He will discuss what stem cells are and the diseases that cell therapies and regenerative medicine can treat emphasizing their potential for treating neurological disorders. He will review pluripotent (capable of differentiating into one of many cell types) and adult tissue stem cells currently in cell therapy clinical trials. Finally, he will talk about the growing marketplace of direct-to-consumer non-FDA-approved stem cell therapies in the U.S.

Meeting location: 
St. Michael's Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437

Jump to this post

@johnbishop Thanks
Teresa

REPLY
@suzylulu

Coleen and John, you are appreciated for your efforts in guiding and answering our questions.

Jump to this post

Jk1234 experience with neuropathy post intervention for sciatica is a possibility. I had back surgery for sciatica about 6 years ago. I only recently developed neuropathy and the neurologist was of the opinion that it is the result of type 2 diabetes and recommended to see an endocrinologist . My internist recommended metformin to treat both problems. I am opposed to more pharma, because the pain is tolerable except early morning getting out of bed or after long walks. I do low impact exercises in the pool which does not cause any pain. At 80 years of age things are breaking down and I don't give it another thought.

REPLY

At this point only symptoms in feet. Was kept awake last night by itching from thumb and up arm but have no sign of redness or rash. Does neurophy ever present with itching instead of tingling?

REPLY

Hi @wanda78wren,

You may notice that I moved your message to this existing discussion in the Neuropathy group. Since you mentioned neuropathy, I thought it would be beneficial for you to be introduced to the many members who have discussed similar symptoms.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'm certain that Mentor @johnbishop and fellow Connect members will join me in extending a warm welcome; in the meantime, may I ask if you've been diagnosed with a particular type of neuropathy? For instance, peripheral or diabetic neuropathy?

REPLY

Hi @wanda78wren,
I would like to add my welcome along with @kanaazpereira. I have idiopathic small fiber peripheral neuropathy in both of my legs/feet but have never had any associated itching. I have no medical training or background but I don't believe it's a common symptom for neuropathy. I did find some interesting information about Neuropathic Itch here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3139924/

It might be helpful for other members in the discussion to know if you have a specific diagnosis of neuropathy and other associated symptoms.

John

REPLY

I am a Ulnar neuropathy patient aged 55 male & I am having problem with both legs. But the woorysome is itching on both legs particuarly during nights which disturbs my sleep. Not only that since i am a CSVD & Brain atrophy patient i don't know anything about neuropathic itching. As Im taking Asprin when itching irritates I use my finger to scrtch and blood often comes. Whats the remedy? Anyone explain

Liked by kishanvasekar

REPLY
@johnbishop

Hi @wanda78wren,
I would like to add my welcome along with @kanaazpereira. I have idiopathic small fiber peripheral neuropathy in both of my legs/feet but have never had any associated itching. I have no medical training or background but I don't believe it's a common symptom for neuropathy. I did find some interesting information about Neuropathic Itch here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3139924/

It might be helpful for other members in the discussion to know if you have a specific diagnosis of neuropathy and other associated symptoms.

John

Jump to this post

Hello. I'm new to this group, and I have been diagnosed with Small Fiber Neuropathy. I have itching (general body and scalp), in addition to the burning on my thighs, and occasionally pain and burning in my feet. I take OTC anti-histamine for my itch, on an as needed basis. Lately I have been taking it every other day. There are times I can go for a week. I've found that's the nature of this confounding disease.

REPLY
@johnbishop

Hi @wanda78wren,
I would like to add my welcome along with @kanaazpereira. I have idiopathic small fiber peripheral neuropathy in both of my legs/feet but have never had any associated itching. I have no medical training or background but I don't believe it's a common symptom for neuropathy. I did find some interesting information about Neuropathic Itch here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3139924/

It might be helpful for other members in the discussion to know if you have a specific diagnosis of neuropathy and other associated symptoms.

John

Jump to this post

Hello @willym, Welcome to Connect. I'm glad you found us. I also have small fiber PN in both feet/legs but I only have numbness and sometimes tingly feeling to slightly above the ankle. I do not have the pain that a lot of people with PN have. I've had mine for over 20+ years but only recently bothered to get a diagnosis in the past 2 years. One thing I have learned is that there are a lot of scams out there looking to take your money in hopes of the cure for PN. You really have to do your homework and do your own research.

You are right about the nature of the disease…we are all a little different in the way that we are affected and what works for one may or may not work for someone else. I know one thing that has helped me is changing my lifestyle and eating healthier and avoiding as much sugar as possible (should really ditch it all, but hey, you have to have some chocolate once in awhile).

@willym have you found anything that helps with your PN?

John
My story here — https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=44#comment-65985

REPLY
Please login or register to post a reply.