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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?
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I recently joined this group but find I am frustrated not to be able to read all. Regretfully, I ask to unsubscribe, please
My PN is also idiopathic. In three years it has spread from the bottom of my feet to both legs and hands.
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1 Reaction@2sweet I'm sorry you are frustrated and not able to read all of the posts. To unsubscribe is easy. When you read the email notification for this post, just go to the bottom of the email you receive and click Unsubscribe.
John
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2 ReactionsMy idiopathic PN (although I think docs didn't explore some possible options) began in my feet in June 2016, and since then has gone up both legs pretty much up to my waist. Not as much in my hands. Heading back to Mayo in August where I hope I can get docs to work with me on possible treatable causes.
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2 ReactionsHello @giarc60 -- welcome to Connect. My idiopathic small fiber PN is in my feet and legs to just above the ankles but I have no pain with my PN. I just have the tingling and numbness with the PN. Do you have pain with your PN? Are you on any medications if you have pain?
I've had my idiopathic SFPN for 20+ years but did not get it diagnosed until mid 2016. The numbness was in both legs from the toes to just below the knees. I started taking a protocol of supplements in Sept 2016 and by December the numbness was down to just above the ankles but sadly has remained about the same since then even though I continue to take the supplements. My feeling is that they are still working as the PN is not progressing as my neurologist said it would continue to do when I was diagnosed. There are a lot of scams out there for the magic cure so you really need to do your own research. Here's a link to where I posted my story if you want to know more:
-- https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=6144dd1510
John
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1 ReactionMy neuropathy is chemo-induced. Is there a different spot for side effects of over-doses of chemotherapy?
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1 ReactionHi @steeldove, I hope they are able to find some possible treatable causes for you. Best of luck and I hope you let us know after your appointments in August.
John
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1 ReactionHello @eurosis and welcome to Mayo Connect.
I see that you are interested in a discussion regarding chemo related neuropathy, is that correct?
Here is a discussion group about that very topic:
– Chemotherapy-induced neuropathy: What helps get rid of it?https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
I’d like to introduce you to other members who have peripheral neuropathy due to chemo. Please meet @pedie @crystalgal @pwarren @allisonsnow @lisamaria @caf132 @greenville50 to name a few.
Teresa
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1 ReactionHi John,@johnbishop
For those who are less-sophisticated medically-speaking, would you like to explain what idiopathic means in comparison to a disorder that is not idiopathic?
Teresa
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1 ReactionHi Teresa @hopeful33250
I would be happy to give you my two cents coming from a nowhere close to being sophisticated medically-speaking person ☺
What the medical world is telling us -- idiopathic: relating to or denoting any disease or condition that arises spontaneously or for which the cause is unknown.
What I heard from an 80+ year old neurologist Dr. Kennedy from the University of Minnesota at a MN Neuropathy Association 20 year celebration meeting:
My favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it.
Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy. More information can be found on his website:
-- http://kennedylab.med.umn.edu/
So there you have it in a nutshell - some idiot neurologist coined the term idiopathic. ☺
Happy Saturday - hope it's a pain free one for all my PN and chronic pain friends.
John
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