My daughter (age 33) has been in the hospital for 8 weeks with GBS. She is on a vent and recovering from 2nd relapse. She is acquiring movement again but also the feeling of paralysis coming and going in her face. She has improved facial expressions. Has anyone felt this and if so was it a sign of another relapse.
when I had it the face was the last part affected. it went to my legs and arms but by the second or third day in hospital my face was numb and that's when we started the iv procedure. I know that for me my face took months to recover. didn't smile right, couldn't whistle, not that that matters it is just the muscles in my face wouldn't allow me to, when I ate food would get stuck in between my gums and cheek and I would have to push the food with my hands so I could chew it. it was all very aggravating. I am 3 1/2 years from getting gb and my face seems ok but I still get numbness in my feet and hands. my hands usually when I'm driving and my feet when I'm working out or walking. it isn't as bad as it used to be but it is still there. wish you the best of luck
barry
The left side of my face is still numb. After 3 years, this is pretty much the "new normal" for me. Fortunately, it's not bad enough that the side of my face droops, it just feels numb.
I have had the same thing, coming and going of paralysis in my face. For me it wasn't a sign of relapse, I'm doing well, otherwise.
I had numbness and weakness in my face the first time and with a reflare but it wasn't as bad the second time. I had trouble chewing, smiling and whistling because my muscles were so weak when this originally struck me. I was particularly happy when I could whistle because I felt like I had overcome some milestone and it was measurable. My face numbness and facial weakness lasted months the first time so I think that it takes time to recover but mine did recover. And after a sinus infection 8 months later, I noticed a little weakness again in my face but nothing like the original time and it didn't last. Hope she feels better soon!
I also have had facial paralysis with GBS. It is going on three years and my eyes still come open at night so I either have to tape them closed or put very thick lubricant in them to prevent them from drying out. facail muscles are still weak and I still have numbness in places on my face.
Facial paralysis is an indication that cranial or bulbar nerves are involved. In some of my reading is is said that if the facial paralysis is symmetrical, it happens at the onset of symptoms like respiratory problem at the beginning of GBS. Facial paralysis that is asymmetrical occuring only on one side or one part of the face happens later on in the recovery stages as the patient is improving. So I wouldn't take this as a sign of a relapse as relapses are rare.
I think one of the confusing and frustrating things and one of my pet peeves about the way GBS is handled by the medical professionals, is that people don't recover completely or in recover in a linear fashion. Yet over and over we are told that GBS patient eventually recover completely in most cases. People go back and forth with symptoms with GBS and this is not an indication of CIDP but the nature of the recovery. Very little is known or written about about the ongoing residual symptoms experienced by GBS patients.
I wish you daughter all the best. Her young age will be an asset in her recovery.
Clare