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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 6 hours ago | Replies (5974)Comment receiving replies
Hi Justin,
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?
Many thanks!
Mark
Replies to "Hi Justin, My apologies if I suggested something other than what you normally do on Mayo..."
I’m there with you! Very very hard. One time got out of my car had a 90 year old look at me they thought I was intoxicated. Looked like they were going to call the police on me. No I wasn’t.!!! I have no balance and I was trying to walk on my feet when I can’t feel them. I know they are there because I feel extreme pain that’s it! Arm’s and hand’s worse. Head, Feels like I’m wearing a hat I can’t take off the hat and my Head is always itching. Hard to keep my head up it’s so heavy etc...you found the group.
Connect
Hi Mark @arcticmark, I think you can post a message asking members who would like to participate to send you a private message by clicking on your member name and going to your profile and select Send Private Message. That way you could trade email addresses and start your own blog/support group. Have you seen this site? https://www.patientslikeme.com/patients/searches/detail_search