Does anyone fancy coming to chat in the room for CMT or even the main room? I used to be in a group where people came in and chatted all through the day?Drop in or send message for a time to meet;
This group doesn’t seem to function in chat or maybe they don’t know it’s there? I’m on line most all day every day and I have games and puzzles I do online but keep my window opened for the CMT group and chat if anyone wants to pop in just to say Hi or needs to vent; I’m open to chat; Spending time with people is my favorite way to feel helpful, needed and productive.
I had a hard time over the holidays keeping up-my adult children are very understanding but it’s very hard for me to not be able to do as much as I am used to. (exhausted so i have to rest.) I just learned this past year that I have CMT so at least I finally know what is happening when I get so tired-knowing why-does help.
Hi Doll here, I have cisp, a form of cidp. Its an immune disease, nerve and sensor disease, it destroys nerve coating like ms, I walk with a cane, I was about 72 when this happened, I was a busy person, gardening, cutting grass, walking. I was laying patio stones and digging when I had severe pain in my back and could hardly move. I kept taking hot showers,it didn’t help. Long story short was sent to Cleveland clinic, and they said cisp. Cidp was discovered in 1980’s. No reflexes on arms and legs, and still can’t use arms much feel so heavy as my legs too. Back pain still have to sit a lot which makes it worse, I have had ivig didn’t seem to help much. Pain and swelling around the middle. Now get severe spasms. Almost like a heart attack and hard to breathe. Getting ivig again. It seems to help this time because my legs were getting weak. Has anyone heard of cisp.