Reply To: Kinda Lost

October 20, 2013 at 2:06 pm

I was admitted into the hospital almost 3 years ago now. I spent about two months in there while they were telling me all the things it wasn’t. The first treatment was the immunoglobulin but it seemed the disease still progressed. After that it was plasma pheresis which at least stopped it from getting worse. The doctors in Sioux Falls couldn’t decide between gbs and cidp. A year and a half later I seen Dr. Windebank at the Mayo Clinic in Rochester and according to him it was the most confusing case he had ever seen because I lost use of pretty much everything but my breathing was never affected. The nerve biopsies (2 of them) showed that rather then eroding away at the myelin it attacked the core of the nerves and worked it’s way out. I was originally planning on visiting Sister Kenny’s in the twin cities but couldn’t get any aid for it. As for my Achilles needing surgery it’s because of how they were out of use for so long and I couldn’t get into physical therapy. Sounds like they just basically stretch the tendon surgically then I will need braces on my legs for awhile. I do use a walker now rather than a wheelchair but can only walk a couple minutes before getting dog tired. I walk like a raptor on the ball and toes of the foot but I am grateful I got this far. I went through 5 lumbar punctures so hopefully they got it right. Three of the puncture were in Sioux Falls and the other two in Rochester. I was also wondering how physically limited the typical person is after treatment? The reason I ask is that the only work I know is all physical and taking classes for something new doesn’t excite me at all lol. If there is anything other information I may have overlooked please just ask. I am so glad I finally found this site. It’s a relief having others who can understand the things I am going through that my family, friends, and doctor just can’t quite grasp. Thank you all so much for all the responses and contacts! Best wishes.