I’m so excited to find this forum! (I’m new.)
AnonymousMay 18, 2011 at 5:50 pm
😀 I am SO happy to find this forum and be able to read other GBS’ers stories and ask questions and hopefully share my own story when I have the energy to write it up properly.
The short version of the story is that I came down with GBS right about 2 months ago now and it was rapid onset but I was extremely lucky that with the care of so many great doctors and other health professionals and the gift of IVIg from so many blood donors, I got better very rapidly and the symptoms never got up beyond a couple inches above my waistline.
I had weakness in my legs and got to where I couldn’t stand by myself or walk without help but my legs weren’t totally paralyzed or totally weak to where I couldn’t move them.
I felt like I’d been given an epidural by the worst point of the illness, as far as my sensations went. I had to have a Foley because I was no longer able to void on my own. I just couldn’t get my bladder muscles to work right. I couldn’t get the bm muscles to work right either and the doctor kept telling me to try but I just didn’t seem to have any control over those muscles.
I never had to be put on a ventilator but the one day when I was at my worst I felt a heaviness on my chest, like something was weighing down and it felt like it took a lot of effort to breathe. But I was still breathing normally and my oxygen level was fine.
They thought I was going to need a ventilator and prepared me for that but I was so lucky that the next morning when I woke up I could tell I was better.
The horrible lower back pain (it was only on my left side though, don’t know why) wasn’t quite as bad as before. I was taking two oxycodone, lying on my heating pad my husband brought for me from home, and I STILL felt the back pain. 🙁 I had kidney stones and they didn’t even hurt that bad.
Oh, man, I am going to have to start my story from the beginning next time to tell it the right way.
Anyway I’m so glad to be here because I have felt very isolated not knowing any other GBS’ers.
Thanks everyone for being here and I hope that each day is a good day of recovery for all of you!
Oh, I’m 50, married, a housewife at the moment. Army wife actually.
Oh and my user name comes from what I said when the ER doctor said “I think you have Guillain-Barre Syndrome.” “Huh what?”
I had never heard of this disease before I got it.
AnonymousMay 18, 2011 at 6:31 pm
Hi Huh What,
Welcome to the forum. I think that you will find the people here very supportive and informative at the same time. You are indeed fortunate that you weren’t more fully involved. One thing to remember is that as quickly as GBS came upon you, recovery to your “former” self may take time. Be patient and allow for rest……it sounds as though you’ve made great strides already, that is great to hear. Look forward to reading more of your story. Hoping each day brings you improvement……stay positive!:D
AnonymousMay 18, 2011 at 8:51 pm
Thank you so much for replying, I know that we have limited energy so I really appreciate it!
Already someone wrote and let me know that he got the twitching too, and I’ve been wondering now for about six weeks if that was normal or not or part of GBS or not or if it meant it was the GBS coming back.
Yeah, I can tell this is gonna take awhile, LOL. Oh, well. 🙂
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