My apologies if I suggested something other than what you normally do on Mayo connect. Every once in a while someone posts about say IVIG and a number of experienced people give their thoughts and then the conversation dies. What I'm trying to do and happy to do through Mayo connect is trying to find people who are going through something somewhat similar to me so we could have a chat periodically like a chat group.
I have gone from traveling the world to being confined mostly to my house or in the heat wave we are having three rooms due to my neuropathy making it so I can't sweat. I have pain all of the time in my feet, legs, back, hands forearms, face, teeth, head and am losing my lower tone hearing (higher tone is normal from loud music). My PN has make it so I walk like a zombie and my hands are getting harder to use as they cramp up.
I would like to have a discussion with some people going through something similar and go "Wow! this is hard;" "This has made me disabled in a matter of 12 months, it's a big change;" or "I have to change how I interact with my friends and my wife because I can't do the things we used to do."
These topics take a sense of privacy and getting to know people. Any idea where I can find such a group?