New to GBS

Anonymous
August 3, 2011 at 11:25 am

I was diagnosed with GBS 3 weeks ago today. I feel very fortunate because it was diagnosed just 2 days after waking up with pins and needles in my feet. Spent a week in ICU/hospital getting ivig treatment for 5 days. Unfortunately on day 5 my face paralysis began to set in. I did get to go home and have been attempting to recover at home since then. I just recently decided to reach out to others online who understand what I am going through. I have always been a very positive person which has drawn me to this forum. I am thankful that everyday I am gaining more movement in my face. I am grateful for my new temperpedic pillow that cost me an arm and a leg but is actually comfortable for “most” of the night:) I am thankful that I have been able to be at home the past couple of weeks to see my beautiful, darling 15 month old daughter grow up even if I can’t hold her (although she just learned how to blow me kisses and it melts my heart!) I am so thankful to have an appetite and a wonderful hubby who loves to cook. I am thankful to have found you, whoever you are that is reading this to share this with. I had never even heard of GBS a month ago and now my life will never be the same because of it. I think about the things I used to take for granted and it is almost comical. I found out yesterday that I am probably going to be admitted to inpatient rehab but I have decided that if that is what I need, I am ready to go even knowing how hard it will be to be away from my baby but I am a fighter and I will beat this.

New to GBS

Anonymous
October 22, 2007 at 2:39 pm

I am new to GBS. A couple of weeks ago my son, turned 34 in the hospital, just woke up one morning paralyzed from the neck down. The Dr.’s say he caught this from a stomach virus. It is a very scary thing! From all the reading and research I have done I believe my son has so far been been a little, luckier if that is the right word to use, than most. Of course it did not help that he had also been bit by a spider and later in the hospital developed MRSA. He went from worse to worse in one week then leveled off a week. He is in PT right now. 6 to 7 days a week sometime 5 to 6 hours a day. Also the family helps to stretch his legs and turn him over etc. I believe my son has a great family and a lot of friends and a lot of prayers to help. There is always a family member with him. Luckily he did not have to be on a ventilator, but it came real close. He gets depressed and has horrible panic attacks. His blood pressure drops very low and he throws up. He had developed a bladder infection from the catheter but has it under control. From Sept. 23, 2007 he has forced himself to get well. He can now move his shoulders, move his arms below his elbow, lift his leg enough to turn over and stood up for 30 seconds. I know he still has a long way to go but he says he will walk in 4 weeks even if he has to be helped in some way. But I believe having family and friends that think very positively in A LOT keeps his mind positive. All of the family pitches in. We move his legs for him until our backs and arms ache but he would never know and if we want to cry we go where he cannot see. I will add everyone here to our prayer lists. There are many. I did not use to believe in prayer but he sure is getting better quicklly. We know he may never be “normal” but we have never been a normal family in the first place. Thanks for listening.