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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@johnbishop

Hi Colleen! @colleenyoung. I'm hoping members posting here in the Living with Neuropathy discussion that really do not have neuropathy or that may have other related chronic pain symptoms will see your post and be able to connect with other members that share their condition and symptoms in a better suited discussion for them so they can exchange experiences and learn from each other.

And for those folks that love to talk (including me! - Hey, how about those Chicago Cubs...oh, forgot, it's football season 😂) there is another one of my favorite groups to check out the existing discussions, find a discussion or post a new discussion and talk away...

Just Want to Talk Group -- https://connect.mayoclinic.org/group/other/tab/discussions/

Happy Thursday!!

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@johnbishop snd @colleenyoung, ooops, for yo say I struggle with double vision off and on throughout the day as well as other eye pics which make it more difficult to type the Mayo names mentioned at the top of the post I'm replying to. S

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@bustrbrwn22

@sunnyflower just cause I want to talk I did 2 steroid injections many years ago the first was relatively painless but on the second one my pain shot through the roof. The doctor said something about sometimes the whatever the thingie is rides the nerve. Conscious sedation is a godsend! Thanks for letting me share.

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Eeeeouch! I am so very sorry you went through that!! Has it resolved? Did they /it work or help? My spine doc only trusts one anesthesiologist to touch me. I really liked him and knew he knew what he was doing. My spine doc has been around for over 30 years. I am really blessed to have these two delivering care to me and wish the same for everyone.!
Warmest regards, Sunnyflower 😊

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@chrs6

Hi Colleen I am interested I am a little bit confused I alSO SUFFER FROM NEUROPATHY I WISH I COULD SPEAK TO SOMEONE

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@chrs6

Here on Mayo Connect, talking is done via text. As the old ad said, "let your fingers do the walking" (through the yellow pages). If you locate the group list, you can learn a lot from people in the Neuropathy group. You could start by reading through messages in this discussion.

Can you tell us more about your neuropathy - when it started, how it was diagnosed, your symptoms, medications you're taking, treatments you've tried, and what specific questions you have. We aren't medical professionals, but there is a lot of information here that might be helpful for you, written by fellow neuropathy fighters. We'll be happy to share our experiences with the different types of neuropathy.

Welcome to the group. You'll find many caring people here.

I have idiopathic small fiber polyneuropathy, and along with a number of others, I've posted my neuropathy story in a discussion labeled "member neuropathy journeys". Those stories could answer many of your questions.

Stick with us. We're here to offer support to fellow sufferers.

Jim

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@sunnyflower

@johnbishop snd @colleenyoung, ooops, for yo say I struggle with double vision off and on throughout the day as well as other eye pics which make it more difficult to type the Mayo names mentioned at the top of the post I'm replying to. S

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@sunnyflower

Like you, memory can be my worst handicap when I try to start a message with everyone's Mayo handle. I could probably help myself by writing down the names I want respond to, saving me a lot of scrolling up and down to get the names right.

Jim

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@hazelnut

I had a ultra sound guided steroid injection for the arthritis in my hip. The rhuemologist must have erred as my leg jumped off the table during the procedure and since that injection I have unbearable pain. The neurologist believes it also polyneuropathy but haven't had tests done for that. I did have the EKG that shows nerve damage. I am on 2400 mg. of Gabapetine and on a regular basis I am in pain that comes and goes. Is there a cure for nerve damage?

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Hi Betty and avmcellar and rwinney, Betty, I am so freaked out and sorry for what happened to you with your nerve injection! I was sedated with what they call Conscious Sedation although I really wasn't very conscious because it didn't hurt at all. But I noticed one of the medications was one that immobilizes or paralyzes so that to me would be the answer to people jumping during the procedure when the needle hits a nerve thus potentially causing serious complications such as you have endured. I think they used a benzodiazepine like Valium and propofol which is the paralytic and a couple of others. That's why they should be done with anesthesiologist who specializes in spine injections, who can administer these medications. There are so many different areas they can inject. Different types of injections for problems in different parts of the spine. I forget the names to them but one is called a facet injection. I believe all of them are done under fluoroscopy so they can see exactly where their needle is going. My last injection last Wednesday, they took two pictures of the two injections and gave me a copy of both which I thought was really neat.

I hope what I'm saying goes public on the blog. Logic tells me patience will have a much less risk of problems and complications and a higher risk of Success full outcomes.

Wishing you all a lot of Victory today in your circumstances and peace for your souls. Many, many blessings and warmest regards, Sunny flower. 😊

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@chrs6

Hi Colleen I am interested I am a little bit confused I alSO SUFFER FROM NEUROPATHY I WISH I COULD SPEAK TO SOMEONE

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@chrs6 What’s up? Is it something you can share through this forum? We’re all here for you

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Hi everyone,
Here are a few tips on managing replies, emails and setting your notification preferences.

Replies and @mentions
It is not imperative to include a specific member's @userame if you are posting to all members following the discussion. @mentions are optional. This article explains more.
- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

Beware that each post = an email
Because each post generates an email to each member following this discussion, it is advisable to stay on topic. Maybe use a "like" instead of a one word response such as "thank you".

Setting your notification preferences
When you follow a group (subscribe or become a member of a group) you can choose between getting an email for each post or an email digest or summary:
- Email me when new posts appear and include in my email digest.
- Include messages in my email digest only.
Learn more about how to follow and unfollow a group, set your preferences and more here: https://connect.mayoclinic.org/get-started-on-connect/

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I would like to know what herbal remedy helps with your neuropathy pain in your feet. Can you send me a private message? Thanks.

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@cwallen9 I think I responded via private message. Foot neuropathy is no joke.

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@jimhd

@sunnyflower

Like you, memory can be my worst handicap when I try to start a message with everyone's Mayo handle. I could probably help myself by writing down the names I want respond to, saving me a lot of scrolling up and down to get the names right.

Jim

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Thx Jim, that has already been suggested. Since my little condo is filled w/ post-it notes I've written to myself and I have so many small spiral notebooks filled w/ resource info, I was only hoping there was a better easier way. If that is what I have to do then I will. I appreciate your input as always! Hope you are much better than tolerable today!! Sunnyflower

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