My husband was diagnosed with GBS and Miller Fisher Variant July 2009. He had numbness from his face down to his toes. He received IVIG treatment (5 doses), had a reaction to it...kidneys shut down and was on dialysis for 3 days. He was in the hospital for 2 weeks and Rehab for 4 weeks. In rehab he was improving (yeh). He could sit up, use his arms and hands, pivot, bare weight, and was walking (with assistance) on the parallel bars and the walker. We were so happy!! This progress was about the 3rd week of August. Then...he was to be discharged on Aug. 28. A few days prior to that...his grips weakened, he couldn't stand up and bare weight...or walk, went back to using a slide board. They told us that this was part of the disease...remissions due to fatigue...and the progress would return gradually. That the recovery is a roller coaster ride. So, they discharged him...and I am the caregiver. He has been home since Sept. 1 (2 weeks now). I have to feed him as he can not even hold a spoon. I have to hold the urinal for him. I use a slide board to move him from bed to wheelchair. I have to turn him...because he can't turn himself. The physical therapist comes 2-3 times a week and I am also doing exercises for him...ROM, stretching, etc. Just wondering if this regression is normal? Does he need a second round of treatment? Has this happened to anyone else? Improving and then drop so drastically. We have an appointment with the neurologist next week, but I am just concerned. Instead of "gradually" improving...he is deterioating right in front of me. Please this is all new to me, and I need some answers. Thanks! Marcia
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