I was diagnosed with GBS in December, 2013. It attacked my facial nerves and lost all movement in my face. My mouth and eyes would note close and I could not move my face at all. I am told with is the less common the GBS that attacks with limbs. Since I have been diagnosed I have found many people who have a friend or relative affected by this disease but I have found only 1 that was affected similarly to me. I had 5 treatments of IVIG and was sent home to begin a very long and very trying recovery. I am about 85 percent recovered but it had been a very hard road. Curious if there is anyone else like me
I was diagnosed May 2011. It ht my facial nerves also. Had facial drooping, couldn’t close my eyes, had hearing loss and swallowing problems. This along with the muscle weakness if my legs, arms, up to my diaphragm. I had plasmapheresis treatments, physical therapy.
Still have some facial drooping, hearing loss and weakness but so much better. Don’t give up hope.
Yes my dear, there are several out there like you. I had Bells Palsy with my GBS. It came on rather sudden and scared the life out of me, I thought I was having a stroke. I too had the IVIG treatment for 3 days. I did 9 pints of it. The bells subsided in 5 days and left very little residual damage. I do however, have tingling in my lips, my nose and chin especially when the we have an electrical storm or when the barometric pressure is low. There are exercises you can do to help I am sure, please talk to a PT and let them know your concerns. Best of luck. Toni
My symptoms started in my face and I ended up not being able to close my eyes, raise my eyebrows, close my mouth or chew. I had double vision and my pupils were not dilating at all. My facial nerves are still recovering, but are doing well. My left side is about 90% better and my right side is about 80% after 4 months. I am seeing a facial physiotherapist that has recommended various warm ups and exercises to help recovery.
I also came down with GBS in dec 2013. Mine started in my face and proceeded down to my feet. All in all I’m still affected in my face and my feet as that’s where it hit me the hardest. Most people don’t notice my face but I do cuz I know it’s there. It’s difficult to eat, drink, talk, and to see and keep eyes closed. I totally understand and have the same frustrations as you do. I just keep having faith that one day it will go away. Still praying!!
I had trouble with my facial nerves as well. At first, I had trouble turning my eyes and a feeling of numbness throughout my face. Then my trouble progressed to difficulties with speech, hearing, chewing, and seeing. Luckily, the speech and hearing problems cleared quickly but it has taken months for the other symptoms to subside but they have. Those were some of the most disturbing symptoms for me. In recovery, when I over do it I am sometimes hit with nerve shaking & twitching in various areas of my body including my face. Boy, do I hate that reminder. I was so afraid during that time that all of this would be permanent or become worse. Thankfully, I have recovered from most of my facial issues and continue to gain strength. Good luck to all!
I also had trouble. Started with my legs, then arms, then full body. Started having double vision. Had trouble with speech, hearing, and chewing. The only problems I have now is spasms in face. Around my eyes mostly, and my nose. But you are definitely not alone. Good Luck.
My daughter was also impacted by this. She had facial paralysis and could barely open her mouth. It's been 4 months now and she has a few twiches, but has recovered in that area. The doctors mentioned that her facial nerves could take up to 1 year to recover.
The left side of my face was affected while I was at the hospital. But thank God that in a few days it was resolved. It also affected my tongue, lips and throat. I was very fortunate that I was able to breathe on my own. I’ve been home a week now. The left side twitches a lot and the tingling drives me nuts and at times, I have difficulty swallowing and my mouth gets very dry
Mine started in my legs then came up to my stomach then hands and arms then right side of my face. Only had paralyses in my face, it’s been 9 weeks since this began. Still have issues with my mouth and with my hands
I’m recovering from a mild case of GBS that began last month. I developed sensory facial neuropathy three days after I recieved my nasal influenza that spread to my hand and legs. I had the same issue with my face following my 2009 influenza vaccine and eventually the numb and painful sensations resolved about one year later although I was never diagnosed with anything.
It’s funny because my Neuro told me that my face getting numb on the right side did not sound like GBS. I am about 5 weeks in. My first attack was very very mild. Hands, feet, legs and right side of my face. My attack yesterday did all of that plus weakness in my right leg and left foot. Scared the crap out of me. I thought I was getting better. Today seems a little better. Seems like lots of us have the facial thing. Hope you are well!
It is very scary, I had the numbness in my hands and feet for a couple of weeks before all my facial nerves went. It happened in one day. Woke up one morning and by that afternoon all my facial nerves were gone. I thought for sure I had a stroke. Fortunately I was very lucky and got diagnosed the next day. It has been over a year and I am almost 100 % It is a very slow recovery. Nerves take a long time to regenerate I have learned to have patience but it took me a while. Every tiny movement was progress and I just held on to each one. Happy to say I am nearing the end of what was a very dark tunnel for me. According to my neurologist statistically GBS in the face is pretty rare, Funny how we all found our way here. I went searching because everyone I knew in the real world that had GBS had it affect their arms and legs and more. Glad to find some common here. I wish you luck, stay strong!
TNGBS said:
It's funny because my Neuro told me that my face getting numb on the right side did not sound like GBS. I am about 5 weeks in. My first attack was very very mild. Hands, feet, legs and right side of my face. My attack yesterday did all of that plus weakness in my right leg and left foot. Scared the crap out of me. I thought I was getting better. Today seems a little better. Seems like lots of us have the facial thing. Hope you are well!
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