Guillain-Barre Syndrome

[livingwith]

In late October 2008 I had the worse intestinal virus ever! I thought I had never been so sick in my whole life. I returned to work Halloween afternoon, but my feet were tingling and before my shift was over, my feet were numb and the tingling had climbed up my legs. November 1, 2008 it took me 20 minutes to get out of bed. I struggled to get downstairs and should have gone immediately to the ER but thought I was still weak from my bout with the intestinal virus. As the day progressed, the tingl...Read the full article

[mariono]

Well done on your positive attitude. Yes, you may never be the old "You" but I am sure you have learnt much about yourself the the true values in life from this episode. I certainly did ( My story - GBS The horror and The Hope) - I am mostly recovered, but have lately been having a lot of pain/tingling in the areas that were numb. Whether this is a regression, or it means that nerves are growing back again I don't know. But as long as I can move I am not complaining about the sensory problems. Good Luck further.

[M_Chapman]

I hope you continue to get better. What a terrible disease. I haven't given up on complete or almost complete recovery. My mom was diagnosed with GBS at the end of June this year. I'm with her every day at the rehab center and unfortunately I'm getting front seat view to GBS progression. My mom as of October 17 is still pretty much paralyzed. It's been about 4 months now. I described her case under August 2009. Doctors have said she has one of the most severe cases they have seen. She regained some movement, mainly in her neck and shoulders, which started returning about 2 months ago and has been getting better and is almost back to normal. Some hand and finger movement is back, but she can’t lift her arms yet so hands are pretty much useless. Also abdominal muscles came back. Her legs are still not moving at all. She’s still on the respirator and takes 4-6 breaths over the 10 that machine gives her, which is also slight improvement. There was about a whole month in which she was completely paralyzed where nothing was moving or working, except for one eye lid and small jaw movement. After that one month paralysis started to subside, starting with the face muscles. One way or the other 4 months up to date without much movement is a long time and I know she’s going through hell, because her mind is as sharp as Ferrari but body disobedient. In her case, autonomic nervous system was also affected to some extent. I have heard of patients being completely paralyzed for months, up to 12 and even more.

We don't know where this illness is going and what will it bring. I get sick to my stomach watching her suffer. Medical staff is very good where she currently is and GBS patients that have been there in the past, all came of the respirators and moved on to physical therapy somewhere else so their progress is unknown. I wish luck, patience and faith to anybody going through this; patients and families alike. This damn thing takes a toll and is devastating.