I'm new here and my wife told me about this site. Never knew about it til last night.'
I got diagnosed with GBS on Dec 22 2013. I'm still fighting it and improving day after day. If you like to know more about what you can do or help loves one. I'll do my best to answer your questions.
Thanks for volunteering to help with information, Patrick. One great way to help is to respond to member's discussions and blogs.
I am 10 months out of GBS. Still having a lot of back pain. Lost my hair and it is now growing in. Feel sick a lot during the day. Need a lot of sleep. I’m hopeful to get the old me back. I use to do volunteer work before and can’t now. I miss people. Hope you are all hopeful for a better tomorrow. Love, Eileen
Thanks and sorry for being slow getting back to respond..
dancermom said:
Thanks for volunteering to help with information, Patrick. One great way to help is to respond to member's discussions and blogs.
Sorry to read this. Everybody is different with the GBS. I only get backaches when I walk with the therapist. I learned not to strain myself with the walk, I just learn to relax and it help a lot and not think about it. I don't get or feel sick and I only sleep for average eight hours of sleep.
I know it's hard and best way is be positive, good attitude, work as much you can and don't over do it. Don't say I can't do it. A little movement is great and you will get more movements down the road.
Eileen bianco said:
I am 10 months out of GBS. Still having a lot of back pain. Lost my hair and it is now growing in. Feel sick a lot during the day. Need a lot of sleep. I'm hopeful to get the old me back. I use to do volunteer work before and can't now. I miss people. Hope you are all hopeful for a better tomorrow. Love, Eileen
I have GBS - just began June 4th after some headaches and slight swollen glands. How bad was your GBS? Do you have full skin sensation everywhere? I do. But the finger muscles under the skin, toe muscles under and every other muscle under my skin from the neck down are numb, even my tongue. I just havent heard any GBS websites talk of this. I have autonomic involvement like heart, liver, intestines, swallowing problems. My sensory nerves just dont seem effected. Do you think this is strange? I am lucky in that my breathing has not gotten bad enough to hospitalize me. My pain has been, but my doc is was not wanting to put me in the hospital for diagnosis and/or pain control. It made me feel all alone in the discovery of what this was, which I did figure out in 3 weeks, and thank God the neurologist listened, did the nerve testing and lumbar puncture as I asked and found high proteins. Tomorrow I begin my first of five IVIG treatments.
Please describe what you went through to me.
Thank you, Eileen. I am trying. For a while I was dealing with this all alone when my Dr thought I looked fine, ignoring every symptom I described, including my heart, and liver enzymes being high (which i found can be autoimmune liver).
I appreciate positive comments like yours, thanks again. (= I hope your back pain subsides quickly. Mine is pretty bad too. Sometimes i wonder if this is even GBS with full sensation of my skin and numb muscles from neck down without paralysis... I just havent heard anyone else describe it like mine is. Hmmmmm......
Can you please describe what you went through?
Eileen bianco said:
I am 10 months out of GBS. Still having a lot of back pain. Lost my hair and it is now growing in. Feel sick a lot during the day. Need a lot of sleep. I'm hopeful to get the old me back. I use to do volunteer work before and can't now. I miss people. Hope you are all hopeful for a better tomorrow. Love, Eileen