Reply To: Restless leg syndrome

February 28, 2018 at 11:28 am

I’m almost embarrassed to talk about my GBS, as I read about what so many in this group are going through.

This past Feb. 14, I went to work after experiencing several days of increasing weakness and numbness. To get to my classroom on the second floor, I had to hold on to the bannister with both hands to make it up the steps. Just the day before I walked up with little thought.

A colleague of mine had GBS many years ago. She was telling us about it as we all talked about the severe effect the flu was having this year. Her experiences sounded similar, so I got onto the computer and looked up the symptoms. It was what I was going through, exactly!

A colleague of mine drove me to the emergency room and within 12 hours, I was X-rayed, MRI’d, spinal tapped and hooked up to my first course of IVG. I was given a room on a step-down unit where I was closely monitored and assessed every two hours. They also encouraged me to walk a lot, which was not easy, but necessary to keep my muscles strong. Every doctor, nurse, therapist etc. who came in told me how fortunate I was. Believe me, I am extremely grateful and humbled.

It’s now 14 days later and I am home after just 5 days in the hospital. Walking is hard, and my hands don’t work very well, but I realize how much better off I am than so many others. From everything I read, recovery takes a while. I really don’t feel much stronger, but definitely not worse. Being patient is difficult though!

Asking questions on this forum makes me feel almost guilty. GBS is so much milder with me than with most others. But if anyone can give me some ideas, some suggestions, I would really appreciate it. How do you decide when you can drive? Go to work? How hard should I push myself? There probably aren’t any definite answers to these questions, but I’d love to get ideas about how others have worked their way through this.