One Year with GBS
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January 9, 2007 at 9:56 pm
I first came down with GBS at Christmas-time a year ago. This time last year I was in the hospital on a respirator. Luckily now I can drive well, walk for maybe a kilameter, go up stairs, sign my name, type, etc. The worst thing is my feet and ankles constantly feel half-asleep with a burning sensation and like they are being squeezed all the time. When I touch something the tips of my fingers have a pins and needle feeling which is unpleasant. I used to do mechanical work and I still do a little on my own vehicles but my fingers don’t have the same manual dexterity as before. If I sit down on the ground it is hard to stand back up again but I can with a struggle. I don’t bother seeing a doctor anymore nor taking neurontin like I did a number of months ago. My left foot and ankle swells up some everyday but goes back to normal by the next morning. Probably I have some blockage as a result of being in bed so long. Anyhow I suppose I am pretty lucky overall. I do feel depressed at times when I think how good I was before this whole damn GBS thing started with me. I would love to have my feet and fingers be normal again. I don’t seem to be bothered by fatigue except that if I stay on my feet too long they ache a lot and I have to sit down. I enjoy reading about other people’s experience with GBS which is a good learning experience for me.
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January 10, 2007 at 9:17 am
I’m sorry Robert, I know how you feel. After my GBS, it was months before all of that went away. Your case sounds more severe than mine was so it would be expected that some of that residual stuff would stick around longer. One thing I did that seemed to help my hands recover faster, at least in my opinion, was playing video games. I know that sounds silly, but I did it right out of the hospital and my hands were one of the first parts to recover, maybe it was coincidence. But definitly just keep a positive attitude, your body is still recovering. Definitly use your hands and feet as much as you feel comfortable with, the nerves need experience doing things again inorder for them to get better. I wish you the best of luck and hope you get better soon.
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January 10, 2007 at 10:37 am
Hello Robert,
I am ten months out from complete parallis, trach, and medical induced coma. I have no problems with my hands other than loss of sense of touch in a couple places. As for my feet, I still dont have much feeling back and the muscels act in wierd ways. I need lots of support to get up from kneeling, and still need lots of oomph to go sit to stand. I had gbs, by the way. When putting on shoes, my left foot seems bigger than the right, like it’s swollen all the time, which it could have water retention due to lack of circulation, which you would think would work itself out with walking, but it doesn’t. The wife still say’s I can’t drive yet, but I think in an emergency, I would have no trouble. Since I was going to retire this march anyway, the want or need to drive doesn’t depress me. I still wake up each morning thinking I will stand on the floor and every thing will be back to pre GBS.
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January 10, 2007 at 2:12 pm
I’m 10 months post diagnosis and still with tingling fingers, feet, odd pain, weakness and fatigue. Most days I try not to think about it and other days it is all I can think about! It could be worse! Maybe next year we can we feel a whole lot better.:)
Take Care
Michelle -
January 12, 2007 at 7:28 am
[QUOTE=Joe Martin]Hello Robert,
I am ten months out from complete parallis, trach, and medical induced coma. I have no problems with my hands other than loss of sense of touch in a couple places. As for my feet, I still dont have much feeling back and the muscels act in wierd ways. I need lots of support to get up from kneeling, and still need lots of oomph to go sit to stand. I had gbs, by the way. When putting on shoes, my left foot seems bigger than the right, like it’s swollen all the time, which it could have water retention due to lack of circulation, which you would think would work itself out with walking, but it doesn’t. The wife still say’s I can’t drive yet, but I think in an emergency, I would have no trouble. Since I was going to retire this march anyway, the want or need to drive doesn’t depress me. I still wake up each morning thinking I will stand on the floor and every thing will be back to pre GBS.
Joe[/QUOTE]
Joe and Robert: I am very encouraged by reading your posts. My Dad’s story is posted in the Main Forum under devestating prognosis. My dad is 63 still on a vent in ICU. Your stories give me hope. Perhaps next Christmas will be different. Dad came down with this horrible disease on November 19-2006. Within 72 hours he was completely paralized and on a vent. He has regained some movement in his arms down to the elbow. Hoping the lungs are next so he can get off the respirator. Would love to hear the time lines of your story. How long everything took! -
January 12, 2007 at 12:17 pm
I think the worst thing about driving after GBS is that even though you have feeling in your feet (such as when you scratch the bottom of your feet with your fingernails), the nerve damage impairs your sense of position. So when you go to push in the clutch your foot is not where you think it is. Lucky for me my right foot is better than the left so with the brake it is not too much of a problem. The other thing is that after driving an extended period of time the pressure of your foot on the gas pedal makes your foot go to sleep so every once in a while you have to pound your foot on the floorboard to wake it up again. Same with your hands if you grip the steeringwheel tightly for too long, then your hands go to sleep and you have to slap them on your leg to wake them back up. Oh well, such is life.
About the vent, I was on it almost two months. I don’t think many people with GBS stay on the vent for more than a few months. While it is unpleasant being on the vent, ones memories of it tend to recede and you have to make an effort to remember what it was like. In fact my whole hospital experience is like one big blur.
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