• Anonymous
      November 14, 2007 at 5:25 pm

      It has been awhile since I found this site and told my son’s story. Sept. 23, 2007 he woke up paraylized. He has come quite a ways since then. He is 34 and states he will leave the rehab walking, even if it is with help. Yesterday he walked 100 feet. He can move his arms and situate his hands enough to operate the nurse/tv remote. He has had days that he sweat so much we had to keep a rag handy to wipe his face. He had muscle spasms in his bladder so bad he would almost cry. He has been on a high protein diet and little liquids because he developed a UTI. He doesn’t have the constant muscle spasms he did at first. Since he has been standing and trying to walk his feet, ankles, calves, wrists and arms have been giving him severe pain. But every time he is having the pain I tell him it is his body trying to come back to life. He has a positive attitude, he is determined, he has a wife and family and friends that have been with him every step of the way. I believe that family and friends, and love and prayers have helped tremendously. I hope everyone that GBS has affected can have the inspirations my son has. He still has a long way to go. I have read so many of your stories of how this has affected you and your life and to be honest it scares me. But stay focused, set a goal and go for it. Day by day. Thank you for letting me share this.

    • Anonymous
      November 14, 2007 at 7:27 pm

      Thanks for the update-
      My dad came down with GBS on Sept. 28, 2007 and was completely paralyzed in all but his eyes. He started showing some return last week with his jaw and seems to be able to slightly move his head left to right. I know that this is a slow process…

      You mentioned that your son “has had days that he sweat so much we had to keep a rag handy to wipe his face” – did you happen to notice if he had mottled skin too? On Sunday, all he wanted us to do was wipe an ice cold rag all over his head- all day long. And on Monday, he was literally sweating buckets- it was pooling in the area between the clavical and the neck. The sheets were so wet that you could see the water marks moving from under him. And, the strangest thing was that his knees were purple and mottled.

      This is the 2nd time this has happened. The last time, he ended up with a fever and they discovered he had developed e-coli in his lung. So of course, now that it is happening again, we are afraid he is getting sick again.
      Did you son have the same thing?
      Has anyone else?

    • Anonymous
      November 16, 2007 at 5:28 pm

      That doesn’t sound right to me. It seems like no one should be sweating that much, GBS or not. I assume they’ve been monitoring his temperature and he doesn’t have a fever? Or does GBS ever affect your metabolic temperature regulation so that your body thinks it needs to sweat to cool off, even though it doesn’t? I’ve never heard of that, but I guess it’s possible. I’d be nervous, too, though. What do his doctors say?

    • Anonymous
      November 16, 2007 at 7:18 pm

      gbs can effect your autonomic nervous system cuz it is a subset of the peripheral nervous system. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • November 16, 2007 at 7:46 pm

      Glad to hear there is progress!! It is always good to hear great news!

      when I was first sick I sweat buckets even if it wasnt warm. I still have wierd temperature fluctuations…not hot flashes. I can get so warm sometimes it feels as if I am going to burst into flames from the inside out, not always with sweating or flushing. My normal body temp is about 2 degrees below “normal”. Yet, I can suddenly spike to 99 or almost 101, and then maybe an hour or so later I will be fine again. I prefer being cold because cold means residuals dont act up. I sleep with my window open and a fan on at night and it has been about 30-35 here. Hubby says I sleep half the night without any covers on, then “wake up” complaining that he stole all my blankets and I’m freezing LOL! Of course I dont remember chewing him out for that but apologize anyhow. GBS does really wierd things to our bodies, some things we may not even realize until we read about it here.

    • Anonymous
      November 16, 2007 at 10:42 pm

      Thats Great news that he is walking. Way To Go!!
      As for the spasms, high protein diet and Little Liquids-What?! He is sweating soo much, which in turn means he is losing water/fluids, why little liquids? He needs to increase the liquid intake as to not become too dehydrated. The pain might be less if he had the proper liquid intake. The spams are not only from a uti, that can be treated easily with higher liquid intake-it flushes the system. Juices are also good for utis especially white cranberry juice.
      Tell your son to keep up his Good Attitude! Take Care.