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.

judypall | @judypall | Mar 11, 2019
In reply to @elained "I developed myoclonus and syncope as a side effect of Cymbalta (duloxetine). It is a rare..." + (show)
@elained

I developed myoclonus and syncope as a side effect of Cymbalta (duloxetine). It is a rare side effect, and I didn't develop it until after I had taken Cymbalta for SIX YEARS. It took 18 months before we figured out the culprit was Cymbalta.

The key is to check your meds for RARE SIDE EFFECTS on webmd or a similar site.

I had every test in the book, and saw a specialist in epilepsy (ruled out immediately), I even insisted on an MRI of my brain.

But it was the Cymbalta and then it turned out I couldn't take ANY SSRI or SNRI without myoclonus and syncope.

And I had taken Prozac beginning in 1988, and other similar drugs for almost 30 years before the problem began in 2016.

Best wishes in finding out what causing your syncope, elizabj.

Regards, ElaineD

Jump to this post

Thank you for relplying. I am not taking any medications at all. So dizziness not from medications. That is one of the reasons I am reluctant to take the medications for pain cause I already feel crappy. So in pain everyday

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lois6524 | @lois6524 | Mar 11, 2019

don't rule out that your crystals in your ear/s are out of alignment -- it can cause a lot of dizziness -- seems strange, but please don't discount that possibility

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1 reply
commworks | @commworks | Mar 12, 2019

Is stem cell injection good for foot neuropathy.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 12, 2019
In reply to @commworks "Is stem cell injection good for foot neuropathy." + (show)
@commworks

Is stem cell injection good for foot neuropathy.

Jump to this post

Hi @commworks, welcome to Connect. There is another discussion on Connect that you may want to read and join in the discussion.

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

I have idiopathic small fiber peripheral neuropathy with only numbness in the feet and ankles and was also trying to find out if stem cell therapy really helps. I have no medical training or background but I can find no evidence that it works and there are a lot of FDA warnings about it which you can find in the posts in the above discussion.

Have you looked into getting stem cell injections for your neuropathy?

REPLY
1 reply
commworks | @commworks | Mar 12, 2019
In reply to @johnbishop "Hi @commworks, welcome to Connect. There is another discussion on Connect that you may want to..." + (show)
@johnbishop

Hi @commworks, welcome to Connect. There is another discussion on Connect that you may want to read and join in the discussion.

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

I have idiopathic small fiber peripheral neuropathy with only numbness in the feet and ankles and was also trying to find out if stem cell therapy really helps. I have no medical training or background but I can find no evidence that it works and there are a lot of FDA warnings about it which you can find in the posts in the above discussion.

Have you looked into getting stem cell injections for your neuropathy?

Jump to this post

I have attended a sales lectures by a chiropractor on stem cells for Neuropathy of feet, but I don't plan to pursue this path. I have also seen a chiropractor for electrical stimulation of feet, but didn't buy into that one either.

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lioness | @lioness | Mar 12, 2019

@commworks If like to add my welcome as John did I have back and leg problems not neuropathy but do have a Tens unit but I'd be keary about putting it on my feet as you Just my 2cents

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lois6524 | @lois6524 | Mar 12, 2019

be very cautious of stem cells therapy -- there is no study that has proved the effectiveness of stem cell for neuropathy -- there are however some persons who have used electrical stimulation with success. It does not eliminate the neuropathy, but creates blood flow to the legs/feet and it may give some relief. Be very cautious if the chiropractor is talking about hundreds of dollars for each treatment

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elizabej | @elizabej | Mar 13, 2019
In reply to @elained "I developed myoclonus and syncope as a side effect of Cymbalta (duloxetine). It is a rare..." + (show)
@elained

I developed myoclonus and syncope as a side effect of Cymbalta (duloxetine). It is a rare side effect, and I didn't develop it until after I had taken Cymbalta for SIX YEARS. It took 18 months before we figured out the culprit was Cymbalta.

The key is to check your meds for RARE SIDE EFFECTS on webmd or a similar site.

I had every test in the book, and saw a specialist in epilepsy (ruled out immediately), I even insisted on an MRI of my brain.

But it was the Cymbalta and then it turned out I couldn't take ANY SSRI or SNRI without myoclonus and syncope.

And I had taken Prozac beginning in 1988, and other similar drugs for almost 30 years before the problem began in 2016.

Best wishes in finding out what causing your syncope, elizabj.

Regards, ElaineD

Jump to this post

Great info @elained - the culprit in my case could be sertraline. Did you end up discontinuing all SSRIs? Not sure I can manage that...

REPLY
elizabej | @elizabej | Mar 13, 2019
In reply to @lois6524 "don't rule out that your crystals in your ear/s are out of alignment -- it can..." + (show)
@lois6524

don't rule out that your crystals in your ear/s are out of alignment -- it can cause a lot of dizziness -- seems strange, but please don't discount that possibility

Jump to this post

@lois6524 I’m not sure what you mean by crystals in ears being out of alignment... can you elaborate and is there a solution?

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jo54 | @jo54 | Mar 13, 2019

If the crystals inside your ear are out of alignment you can have vertigo. You need to see an ENT if you have this problem

REPLY
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