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

You may want to check with your local health care agencies to see if there are groups that meet privately for peer discussions. If you live in a large city, I'm sure you will find something. And maybe some of the monitors here may open a peer group. I don't really know for sure. I'm guessing.

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?

@isthisneurological if you are feeling distress you should really discuss this with a doctor, either you primary care doctor, a neurologist if you have one, or if the distress is acute, go to the ER. As John said, people here can answer questions based on their own experiences, but that isn’t a substitute for a qualified medical opinion.

@isthisneurological - John, Aaron and @cb3 have provided excellent advice. I have found this forum to be helpful because the information and comments come from those who live with peripheral neuropathy and found helpful ways to cope with it. I live in an area at the beach with a small population. I knew of nobody with PN until I found Connect. You'll find you are not alone and sharing experiences relating to PN is not only helpful to you but helps others as well. Wish you the best. Ed

I’m happy to talk with you about my ongoing circumstances, this issue. Cell is in my profile. Call any time after early afternoon, when I will be off this airplane.

While I agree with part of your reply I believe there is great value in the stories of others. Their experiences can suggest questions to ask your doctor. And they can help you decide whether that particular doctor is the best for you by the manner in which he answers. My first two oncologists failed to diagnose my neuropathy. It was due to online research that I was able to (correctly) self-diagnosed my neuropathy, and find a better provider.

thanks. I didn't see a way to respond directly rather than publicly, is there a way for you or me?

@gdf, I appreciate your willingness to share your cell phone number. Because Mayo Clinic Connect is a public forum, the community guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) recommend using the secure private message to exchange personal contact information.

Having said that, I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the Neuropathy support group many members, including people who do not post, benefit from from your knowledge and experience and others can chime in as well.

@isthisneurological, you can receive private messages. You will be able to send private messages in a few days. There is a brief period where new members can't post links. We do this to deter spammers from spamming members through private messages and to keep the community safe.

Sorry about that.

No problem. Your kindness is appreciated. Also want to keep members safe.