PN Group: Web Admin: A Big Thumbs Down

@linuxusr, welcome.
Here is the URL for the Neuropathy support group on Mayo Clinic Connect https://connect.mayoclinic.org/group/neuropathy/

There are over 70 support groups on Mayo Clinic Connect. You can find all of them in the Group Directory at the top of every page. See https://connect.mayoclinic.org/groups/

To find discussions related to your questions and concerns about peripheral neuropathy, I suggest using the Neuropathy group's search https://connect.mayoclinic.org/group/neuropathy/

I invite you to introduce yourself in this discussion:
- Living with Neuropathy - Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Leaving aside the issue of how hard it is to find this group (I found it easily), in my opinion this is one of the best run forums I participate in. I particularly like the volunteer mentors, who willingly spend a lot of time providing valuable information and direction.
As an aside, I have found that one of the best things I can do to treat my PN is to avoid anxiety, in part by not allowing small things to aggravate me.

I hope that now that you've found us, maybe it will be easier to ask, contribute, and learn. I have gotten so much from this Group membership and the Admins that I could take a whole page to tell about. My life skills and coping mechanisms are the best I can achieve with my PN limitations, and I give most credit for that to the many contributors sharing experiences and products/tools on this site. I hope the same success for you!

@linuxusr Now that you've been offered helpful links and suggestions, I hope you have found a good place for information and interaction. Is there something specific you're looking for?

I understand the frustration of navigating websites - been there. I basically only use my android phone to participate in Connect, and there are limitations. It's just handier for me than using my laptop.

Whatever the issues, my experience with Connect has been, and continues to be a very good resource for me in my various health journeys. I hope that you'll be able to say the same as you get to know us.

Jim

@dbeshears1 Debbie - you are so right!! And I will give this group two thumbs up. Living in a beach community, our population is on the low side, and I knew of nobody with peripheral neuropathy. This group has given me support and information that helps us better live our lives. When someone has a question, many times, the mentors will provide information leading to answers. Information is the best way to deal with PN. And let's not forget those in our group who have decades of experience in dealing with PN. Their knowledge about PN and their ability to pass on that information to newly diagnosed is without question extremely valuable. This forum provides the avenue for many of us to share our experiences with others. Knowledge on now to help cope with this mysterious disease. Million thanks to Mayo, our mentors and those who contribute. Two thumbs up!

Hi @linuxusr ,

I did not have any issues finding this wonderful page. Sometimes, the best treasures are below the surface, that much more appreciated because of the work it took to get there. It also belongs to the IT department how this "blog" ranks in search engines. They are also responsible for the ensuing directions, which I found easy enough.
I have not thought about Linux since the nineties in New Mexico, so thank you for bringing back great memories.

As for your neuropathy, read the old posts, there is great information there. Along with the places to research as highlighted by our tireless mentors.
JFN

This group has been of ENORMOUS help to me, and especially because of the dedicated and hard-working (and UNPAID) volunteer admins who take time to direct people to the best location to find answers to their questions. I've never been a part of a better group than this one!! BRAVO to the admins!!! Mike

When you are on the site you can check to follow the neuropathy group and how often you want the notices sent to your email. That way when you open the email you are on the site.

I agree with all of the wonderful comments about this site. We all have different causes of our PN. This site digs into all of them and gives us ideas and information and support. I am thinking, by what I read, that if science can figure out which cause of PN we suffer from than there will be a specific proven remedy or at least product which will personalize the a solution for that person. For instance there are so many types of cancer and methods of curing. Why not PN. My cause, I think, is a heart medicine Amiodarone which damaged the myelin sheath around the nerve in my feet. I have read so many studies trying to find the method of regenerating the myelin sheath around the nerve. The closes I have come is studies done for MS which has to do with the cells called oligodendrocytes in the brain which would possibly repair the myelin sheath. I just keep hoping and reading research.

@karleenhubley Keep on reading and connecting the dots Karleen! I just watched this video and was so inspired by Martha Carlin who calls herself a citizen scientist: https://youtu.be/Ph4L_JHeB3I?si=uJbH4GSlTv1srr7x