AnonymousMarch 3, 2007 at 6:07 am
Hi, I was diagnosed with GBS in August 2005. Besides the normal pain in feet, hands, back and some fatigue, I still have some facial weakness. I was just wondering if anyone else has problems with facial weakness and/or problems with vision?????
Does anyone out there know how long is too long as far as recovery goes? If I still have facial weakness after a year and a half is it most likely something I will always have?
Looking for my smile,
AnonymousMarch 3, 2007 at 12:52 pm
hi paula. i still have facial weakness as well as numbness in my mouth, tounge, throat, gums, etc. and i was diagnosed in nov. 2001. it has affected my tastebuds a bit too. (not my eating, unfortunately), but i’ve learned to live with it. this is normal. it’s annoying, but it is normal. stay well.
AnonymousMarch 3, 2007 at 10:22 pm
Thanks for the replies. It seems kind of silly for me to fret about my smile when I’ve come a really long way, from where I started and there are so many other’s with much more paralysis then this. But it really helps knowing there are people out there who can actually say, “they know how you feel”.
AnonymousMarch 4, 2007 at 11:08 am
Welcome. I was diagnosed with GBS in last week of May, 2005, just three months later of yours. I did have the weakness of face. But due to electric stimulation, the face become as it was. I was given elec. stimulation for two weeks; about 20/25 minutes per day.
Pl let us know whether any such type of electronic or electric stimulation has been applied to you by PT? Or what the medication you had taken for the same?
Bye Bye, take care.
AnonymousMarch 5, 2007 at 7:33 pm
Those darn facial nerves are tough to recover. It took a year before my left eye lid decided to work, and my lower left lip is still out, post GBS 10 years. They say it does not help medically, but I use a vibrator on my face- it feels good- and I do it because who knows what tiny muscles are atrophying due to non-use…. let’s keep those buggars working regardless, I say!
I noticed a decrease in sensitivity on the left side of my face, as if someone drew a line directly down the middle. It seems the left side is West Germany and the right side is East Germany. My smart facial cells all want to live in the East 🙂
AnonymousMarch 15, 2007 at 11:30 pm
paula, i was dx in feb. 05 and also had electric stimulation while in pt. it was actually the speech therapist that did it and it really helped then. i could still see that my face still fell around the eyes, corner of mouth and around the jaw line. i have now been getting acupuncture for about four weeks and she did do this to help the facial muscles. i can see a difference but some of my friends say they can not tell but i put the make up on it every day so i can tell the results. i am happier with how it looks now than i have been for 2 years. dont know how it would work on others tho. i guess it is trial and error as it is with all the things that go with gbs. i also had miller fisher variant. even with the acupuncture it is a slow process and you cant always tell after a treatment if it will help for a day or so. so good luck
AnonymousMarch 16, 2007 at 2:08 am
Thanks for the reply. I asked my neurologist over a year ago about electric stimulation and he said that it would be used if I had no facial muscle at all, but since I had some it wouldn’t be necessary. But only part of my face works, so why wouldn’t it do any good for the part the doesn’t . Sometimes these doctors don’t make much sense. I actually quit seeing this doctor about 6 months ago.. I guess I need to find another one. I was in PT when in the hospital, and for a while after I was sent home they came out to my house for PT. The doctor never really seemed all that concerned with the facial paralysis. I’ve been taking LYRICA for the GBS.
Someone else said they were getting acupuncture on their face and it seems to be helping. I think I might check into that.
How soon after your diagnosis of GBS did they give you electric stimulation? I wonder if it would do me any good now after it’s been 19 months.??
How bad was your GBS and how are you doing now?
AnonymousMarch 18, 2007 at 3:44 am
By the grace of God, my case was not so bad becaz just within one/two days, I was diagnosed as suffer of GBS and my Doc injected IVIG (one dose of continuous 6 bottles, each having 5 gms of ivig in 100ml fluid, another dose after 8 hours, in all three doses i.e. total 18 bottles) which helped to stop the progression of GBS. I stayed in hospital under observation for 1 week. I never had the problem of walking, Once I was stand on my feet I was able to walk independently. My problem was to stand up from sitting position and vice versa. I was not able to hold anything in my hands.
After returning home, two days later, my face became victim of paralysis, right side of face was affected and closing of my eye lid was also the problem. Immediately my PT started Electric stimulation which last for 10/15 days @ 20/25 minutes per day, along with 35/40 minutes light exercises.
Gradually face became as it was. I recovered fully within one & half month. I have no problem in day to day routine work, except some residuals like tremors in hand; early over exertion and tiredness; need to take more slip etc. etc. I do not take any medicine since last one year or so.
As far as you are concerned, after 19 months, Doc/PT expert can tell you more about it.
I would like to narrate here the story of one of my colleagues, (and is residing very near to me in our colony; aged around 30 years) was also down with GBS in October, 2006, who had the same facial problem and the same PT had used elec stimulations. His condition was worst than me bcaz he was paralyzed below waist. Elec.stimulation was applied to his both legs first which were badly affected and thereafter to his face. His recovery period was two months. Nowadays he is also very normal. I therefore feel you should seek the advise of an expert PT again in this regard.
Bye Bye take care.
AnonymousMarch 18, 2007 at 10:53 pm
paula, yes she does put the needles in my face. she has worked on the paralasis and on my sinuses. she also has worked on my feet and legs, hands and arms, and stomach and back. in other words she works all over the body depending on what she sees i need that day. it really doesnt hurt like i thought it might and i have seen progress. good luck,barbara
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