Guillain-Barre Syndrome - Immune Disorders Message Board

emjsmith · 05-17-2004, 10:05 PM

Hi, I am writing to see if there is anyone who has had or knows someone that has had Guillain-Barre Syndrome? My Grandmother is in the ICU and is believed to have this disease. She is on a respirator and is not at present showing signs of getting off of it. If there is anyone who knows of this disease especially if they know someone who has recovered from it I would truly appreciate hearing your story about it. We are at a loss never hearing of this and would love any help we can get. Thank you in advance for any response.

AlwyzSick · 05-18-2004, 03:35 AM

HI! I'm sorry to hear about ur grandmother.But i think i have some pretty good news for u. Most everyone (even people with severe cases) recover eventually! Although they may not be the same person. My grandma was diagnosed with this and she finally got over it and now she is fatigued a lot but shes alive at least and i thank god everyday for that. Anyway, did your grandma have surgery or take any new medications recently? Because that supposedly can cause GBS. Hope i helped you a little. If u have any other questions feel free to ask.
Hope all is well!

emjsmith · 05-18-2004, 01:43 PM

Thank you for responding and yes that does help. I think sometimes Doctor's do not want to say what a cause could be. She started a new medication for high blood pressure but the Doctor told us that was not it. Sometimes I think they are worried about covering themselves. Each day they come in and test her strength in her arms and legs and so far she has not had any or little response in her arms. The Doctor said classic case would have been for it to show in her legs then her arms but she did the opposite arms then legs. He said he has seen it like that but legs first is still more common. My Grandmother was very active, lives by herself and works full-time. It is hard to know how she is going to be right now they have her pretty sedated while she is on the respirator so we have not been able to communicate with her since Friday before she went to the ER. Will she be able to go back to her normal life of living alone? I know that is hard for you to answer not knowing her or her condition but was just wondering how bad your Grandmother got? Was she on a respirator also? If so how long was she on it? Thank you again for responding right now my family and I are grasping at any information we can. Thanks Again, Melody

californiasunflower · 05-19-2004, 07:33 AM

Melody--

One of our board members, GEMI, is possibly experiencing this herself. See her posts in Brain & Nervous and also in MS.

Lots of Hugs to you and your grandma!

angelwings171 · 09-16-2004, 01:57 AM

Melody, I was wondering how your grandmother was doing? I am recovering from a severe case of Guillain Barre Syndrome (GBS). GBS=Getting Better Slowly and this is true for every case. I hope you have seen improvement. Please update us.

Angela