All about Guillain-Barré syndrome: Debbie's story!

I lost control of both feet at the same time and fell right on my kneecaps. I got up and went to work. By the time I was coming home, I couldn't walk the 15 minutes home. I went to the hospital but they just xrayed my knees.

I didn't find out it was GBS until 20 December 2000. It was too late for any treatments at that point.
I did get strong ibuprofen painkillers though, and a lot of blood tests and a nerve conduction test. I was almost hospitalized but decided to go home and stayed at home (by myself). I had lost the ability to walk and drive by this point. The paralysis wasn't complete (I could move my feet some, but there was no sensation from the ankles down).
I could use a walker with a lot of effort. I managed to cook food with great difficulty and slept a lot. The weakest that I got was one night a little over a month after the start of GBS when I had to fight to roll over in bed. By the next morning, I could roll over again.

I learned to walk again very slowly as muscles reconnected. My "walk" would change every day. I started walking around my apartment and tried to increase the distance a little bit each week, then when I got better at it, I increased it every day. I then went outside and worked up to going around the block. When I could walk for 20 minutes without stopping, I started driving short distances (5-10 min drive). I built that up and now can drive for over an hour at a stretch.

It turns out I was also very low on vitamin B12 and thyroid hormone. I take thyroid pills daily and get B12 shots once a month and feel very good now.

I went back to work on April 11, 2001. I used a cane at this point and took a cab to the train station. I started out doing 4 hours per day and added 1 hour to the workday each week until I was up to 8 hour days again. I started walking home with a cane the second week. I would use the cane to get to work and then leave it in my office until I went home. By June (7 months after getting GBS) I gave up the cane entirely.

Now, a little over a year after getting GBS, I walk over a mile and a half to the train 3 times a week (same work schedule as before). Sometimes, I walk from office to train also instead of the subway. That's a little over an hour of walking in one day. I don't have all of the sensation in my feet yet, but they are still improving. My feet are very sensitive and a little painful but I hope they will return to normal someday. I actually went up a ladder today and stood on a step stool to paint some walls also!

I look completely normal and do 98% of the things I did before. My balance is a little off and I am not quite as coordinated since I am not getting all the information from my feet yet but I manage with what I have. Now you know of at least one person who is okay and pretty much normal after GBS!

Update, May 2004 : Its now over 3 years since GBS struck me and I continue to walk, work etc.
I actually do more walking now than I did when I wrote the history - somewhere between 3-4 miles/day during the week. Am avoiding flu shots and no doctors have even suggested it. I have had only 2 or 3 colds in the entire time since Dec 2000. This is a lot less than I was getting previous to GBS.

My toes and feet still have some burning sensations and the occasional
"needle stick" effect when something connects. Once in a while the outside
corner of my right eyelid goes numb for a few seconds. This has been going
away slowly. My left eye wasn't affected at all. The numbness doesnt affect
my vision any.

Thyroid levels are excellent and all other medical tests are returning to normal levels. My feet continue to improve and I am getting a lot of sensation in toes now. Hopefully, all the repairs will be done soon!

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