I've read a few accounts of cerebral involvment. I am convinced that I'm experiencing (and have before, in retrospect) increased ICP symptoms. Before I was diagnosed in 2010, I had a few years where I was having what I think were "drop seizures" - total loss of muscle tone so brief, I'd be alert as I fell. There was a certain "fuzzy headed" sensation that warned me. I finally quit driving for a long time. I also cannot sleep lying down. At sll. Something makes me wake up enough to get out of bed and stand up. I feel only half awake for days. After bring upright for 12 or more hours, the foggiest lessens even though I'm exhausted from no sleep. I get double vision. Often I feel the need to breathe more deeply but I have to make a conscious effort.
I got off IVIG 3 years ago after being on monthly for 3 or 4 years. Now I see chronic symptoms that have come back and just stay. Swelling in legs and knees so tight I've sprung leaks. Joints are getting so painful, it's hard to walk. Also, when I get up in the morning, I feel like I'm being pulled to the left and I stumble constantly. This lessens during day usually but I have become very unsteady in general. Any insights?