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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.

Mentor
John, Volunteer Mentor | @johnbishop | Mar 27, 2019
In reply to @artscaping "@dabshire, @johnbishop I am confused. I thought baker’s cysts formed when the knee was inflamed or..." + (show)
@artscaping

@dabshire, @johnbishop I am confused. I thought baker’s cysts formed when the knee was inflamed or the meninges was torn and acting up. Sort of like our body trying to help us heal. If that is true, then the purpose of the surgery would be to fix you so you don’t get baker’s cysts any more. Mine went away as a result of the knee replacement surgery. Before the surgery, I had it drained several times and it came right back. Help me with this one. And may we all be free of suffering.....today and let’s hope tomorrow. Chris

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@artscaping you are correct. I wasn't aware that @dabshire had a Baker's cyst. Mayo Clinic has some information on their website here:

Baker's cyst
-- https://www.mayoclinic.org/diseases-conditions/bakers-cyst/symptoms-causes/syc-20369950

REPLY
grandmaR | @grandmar | Mar 27, 2019
In reply to @artscaping "@johnbishop, @grandmar Wow, this is good information. I have recently lost a toenail and had my..." + (show)
@artscaping

@johnbishop, @grandmar Wow, this is good information. I have recently lost a toenail and had my fingernails start to break and peel. It may be the boniva medication. I will look into this possible solution and discuss with my Primary care provider (PCP). Thanks.

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@artscaping
Hi!
I went to the podiatrist today and asked her about the nail thing. She said it probably wasn't from the neuropathy. She asked if there was anything going on with my thyroid that I knew about. Yes, there is. For the last 3 or so months, my thyroid has been out of wack, even with the meds. She said it is likely coming from that.
Ronnie

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 27, 2019
In reply to @grandmar "@artscaping Hi! I went to the podiatrist today and asked her about the nail thing. She..." + (show)
@grandmar

@artscaping
Hi!
I went to the podiatrist today and asked her about the nail thing. She said it probably wasn't from the neuropathy. She asked if there was anything going on with my thyroid that I knew about. Yes, there is. For the last 3 or so months, my thyroid has been out of wack, even with the meds. She said it is likely coming from that.
Ronnie

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@grandmar That is interesting, Ronnie. What was wrong with your nail? I don't recall reading about that.

REPLY
1 reply
grandmaR | @grandmar | Mar 27, 2019
In reply to @hopeful33250 "@grandmar That is interesting, Ronnie. What was wrong with your nail? I don't recall reading about..." + (show)
@hopeful33250

@grandmar That is interesting, Ronnie. What was wrong with your nail? I don't recall reading about that.

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@hopeful33250
Hi Teresa,
I actually just mentioned it either yesterday or today.
My toe nails are breaking like crazy, and vertically (ouch).
I keep my nails as short as possible and I get a pedi every 3 to 4 weeks.
It just started about 2 pedis ago.
That is when my first thyroid test came back crazy!!
Who knew????
Ronnie

REPLY
1 reply
dabshire | @dabshire | Mar 28, 2019
In reply to @artscaping "@dabshire, @johnbishop I am confused. I thought baker’s cysts formed when the knee was inflamed or..." + (show)
@artscaping

@dabshire, @johnbishop I am confused. I thought baker’s cysts formed when the knee was inflamed or the meninges was torn and acting up. Sort of like our body trying to help us heal. If that is true, then the purpose of the surgery would be to fix you so you don’t get baker’s cysts any more. Mine went away as a result of the knee replacement surgery. Before the surgery, I had it drained several times and it came right back. Help me with this one. And may we all be free of suffering.....today and let’s hope tomorrow. Chris

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So am I John Bishop. Im just so tired of this ,it is driving me insane.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 28, 2019
In reply to @grandmar "@hopeful33250 Hi Teresa, I actually just mentioned it either yesterday or today. My toe nails are..." + (show)
@grandmar

@hopeful33250
Hi Teresa,
I actually just mentioned it either yesterday or today.
My toe nails are breaking like crazy, and vertically (ouch).
I keep my nails as short as possible and I get a pedi every 3 to 4 weeks.
It just started about 2 pedis ago.
That is when my first thyroid test came back crazy!!
Who knew????
Ronnie

Jump to this post

@grandmar Thanks for the explanation. I wasn't aware that the breaking of nails was a sign of thyroid problems either. That is interesting. The vertical breaks have to be very painful 😢

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Apr 2, 2019
In reply to @johnkatie "My story , the doctor told me I have neuropathy , started with burning feet for..." + (show)
@johnkatie

My story , the doctor told me I have neuropathy , started with burning feet for awhile then went to numbness in my feet and toes. My blood work all came back good but my glucose which was 120 and I have been told for 10 years I am pre diabetic but not type 2. It has now been 4 weeks and actual the pain in my feet only comes at night and it is not real bad some aspirin will calm it down. Here are all my questions. could neuropathy stay just in my feet , is leg weakness normal ? i also have lots of muscle twitching mostly in my legs but twitches can occur anywhere , arms shoulders , abdomen . I also get lightheaded at times . Are these symptoms normal ? Thanks for all comments,

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Hi @johnkatie, welcome to Connect. There is another discussion on Connect where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion.

> Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

From what I have read neuropathy is a progressive disease but each of us are different in how it affects us. Here's a good resource for more information.

Peripheral Neuropathy Fact Sheet
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

You mentioned your doctors say you are pre-diabetic. Have you been working on lowering your glucose levels? I have no medical training or background but I have the same situation as you have - my doctors have told me for quite awhile that I am pre-diabetic and I've mostly ignored it until I found out sugar is bad when you have neuropathy (probably even if you don't have it ☺) so I've been working on lowering my glucose levels for the past 3 or 4 years. It still is a struggle though.

REPLY
johnkatie | @johnkatie | Apr 2, 2019

My story , the doctor told me I have neuropathy , started with burning feet for awhile then went to numbness in my feet and toes. My blood work all came back good but my glucose which was 120 and I have been told for 10 years I am pre diabetic but not type 2. It has now been 4 weeks and actual the pain in my feet only comes at night and it is not real bad some aspirin will calm it down. Here are all my questions. could neuropathy stay just in my feet , is leg weakness normal ? i also have lots of muscle twitching mostly in my legs but twitches can occur anywhere , arms shoulders , abdomen . I also get lightheaded at times . Are these symptoms normal ? Thanks for all comments,

REPLY
2 replies
johnkatie | @johnkatie | Apr 2, 2019
In reply to @johnkatie "My story , the doctor told me I have neuropathy , started with burning feet for..." + (show)
@johnkatie

My story , the doctor told me I have neuropathy , started with burning feet for awhile then went to numbness in my feet and toes. My blood work all came back good but my glucose which was 120 and I have been told for 10 years I am pre diabetic but not type 2. It has now been 4 weeks and actual the pain in my feet only comes at night and it is not real bad some aspirin will calm it down. Here are all my questions. could neuropathy stay just in my feet , is leg weakness normal ? i also have lots of muscle twitching mostly in my legs but twitches can occur anywhere , arms shoulders , abdomen . I also get lightheaded at times . Are these symptoms normal ? Thanks for all comments,

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Thanks John I started eating better I will go to the other discussion and see what others are saying ,,,,,,,, thanks again

REPLY
doneuro | @doneuro | Apr 6, 2019

Hello, I was diagnosed with small fiber neuropathy in 2014. I now have a herna, seeing surgeon soon. Is surgery a concern for someone with SFN? I am 64 years old. Thanks all.

REPLY
2 replies
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