Reply To: CIDP IVIG – more acronyms, please…

January 30, 2019 at 9:53 pm

Hi there! You sound like a wonderful person! Smart, hard-working, positive, and I detect a sense of humor.
If you haven’t already, check out the support tab (above) for groups in your area. It is a good place to start. Actually, this whole website and organization are great. Even before I was able to go to a local support group, I read deep into the “archives”. Just reading other people’s experiences, progress, and questions (even years old) helped me “get” things. I met someone at a meeting whose experience was almost identical to mine (even month of onset of GBS) except that my lifelong insomnia got better (because I was always exhausted) and they could no longer sleep well due to pain.

Back in the day, I would clean like a maniac when frustrated. After diagnosis (and 2 months in the hospital) I got tired just brushing my teeth. My energy level is better, but I still wish I had super-organized and simplified when I could run around like a maniac. I can go for long hikes, but standing in one area (like a cashier) is excruciating.