1. < Neuropathy

are there peers for neuropathy? has anyone helped beginners as a peer?

Posted by isthisneurological @isthisneurological, May 18 10:20am

I thought my distress could be neurological feelings.

I noted parts of what it can be like, and I'm afraid it's long for reading or for a good idea to share with many and increasing people I didn't meet yet, because the situation is distress now, so I'm overwhelmed to read first, I could only search neurological places to ask

Is there a more private, less overwhelming way to check on it? I mean more like experienced peers, not providers, maybe to talk some things through with

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

pah17 | @pah17 | May 30 12:45am
In reply to @johnbishop "Hello @isthisneurological, Welcome to Connect. You have a lot of neuropathy peers here on Connect -..." + (show)
@johnbishop

Hello @isthisneurological, Welcome to Connect. You have a lot of neuropathy peers here on Connect - beginners as well as ones with more experience. Connect is for patients so that they can learn from the experiences of other patients. You can find out more about Connect here - https://connect.mayoclinic.org/blog/about-connect/.

I found Connect back in 2016 trying to find answers to questions I had with my idiopathic small fiber peripheral neuropathy diagnosis. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

You have a wide selection of discussions in the Neuropathy Support Group to choose from. Here's a link to the list of discussions - https://connect.mayoclinic.org/group/neuropathy/.

Is there some information or a discussion group that I can help you find?

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When I read this post, I thought of you, John. I appreciate the time and effort you put in as a mentor in this site.

REPLY
Sunny22 | @sunnyhunt | May 31 1:07pm

I have CIPN that started in 2010. It was extremely difficult to get used to dealing with it, but life goes on. It was the only problem I discussed with my PCP. When he prescribed ciprofloxacin for a uti in fall of 2022, I pleaded with him not to as there is a warning on the Rx paperwork that it should not be given to patients with neuropathy. But he said he had no choice. ( funny, I found alternatives) So I took it and it was the worst mistake! It made my cipn twice as bad!
I wonder if anyone else has had a similar experience, or can give me some advice/hope that it will get better. I am trying to finally get TKR for both knees which was delayed because of the pandemic, and then because of the backlog, and now wondering how much this nerve damage will effect the results.

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Mentor
John, Volunteer Mentor | @johnbishop | May 31 1:16pm
In reply to @sunnyhunt "I have CIPN that started in 2010. It was extremely difficult to get used to dealing..." + (show)
@sunnyhunt

I have CIPN that started in 2010. It was extremely difficult to get used to dealing with it, but life goes on. It was the only problem I discussed with my PCP. When he prescribed ciprofloxacin for a uti in fall of 2022, I pleaded with him not to as there is a warning on the Rx paperwork that it should not be given to patients with neuropathy. But he said he had no choice. ( funny, I found alternatives) So I took it and it was the worst mistake! It made my cipn twice as bad!
I wonder if anyone else has had a similar experience, or can give me some advice/hope that it will get better. I am trying to finally get TKR for both knees which was delayed because of the pandemic, and then because of the backlog, and now wondering how much this nerve damage will effect the results.

Jump to this post

Hi @sunnyhunt, You might want to scan through these comments posted by other members who suspect their neuropathy symptoms may have been the result of taking ciprofloxacin -
https://connect.mayoclinic.org/search/comments/?search=ciprofloxacin%20and%20neuropathy

REPLY
1 reply
Sunny22 | @sunnyhunt | Jun 1 9:30am
In reply to @johnbishop "Hi @sunnyhunt, You might want to scan through these comments posted by other members who suspect..." + (show)
@johnbishop

Hi @sunnyhunt, You might want to scan through these comments posted by other members who suspect their neuropathy symptoms may have been the result of taking ciprofloxacin -
https://connect.mayoclinic.org/search/comments/?search=ciprofloxacin%20and%20neuropathy

Jump to this post

Thanks John. I waded thru a lot of those comments and was not surprised to learn that so many others have become victims of this drug. I guess it was just foolish hope that someone might found something that would help, even if it was just a smile and some words of wisdom on how to enjoy life in spite of it. Don't doctors research these presciption drugs for these serious side effects....especially like in my case where I already had it, and seek an alternative? I have lost confidence and a lot of respect for my PCP. And that's not a good feeling.

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