AnonymousDecember 15, 2008 at 7:17 pm
I was diagnosed with GBS in February 2008. My case was a mild one overall, but had severe facial paralysis. Today, I am still unable to move my entire face but have some movement. Has anyone had PT for their face, medicine or anything else to help re-juvenate the nerves in the face? Anything would be greatly appreciated. At this point, I know I should be thankful for what I have overcome but feel like people stare when I talk because my face does not completely move. Thanks in advance, and this board is extremely helpful.
AnonymousDecember 15, 2008 at 9:42 pm
I have to agree with Tina’s wise words. Speech therapists will help you out a lot. They are well qualified to deal with a whole lot more than speech including how to eat, talk, and keep from drooling. Talk to your primary care physician and ask him to arrange to get therapy.
There isn’t much that will help nerves repair and regenerate except for time and the body’s own healing powers. Please don’t waste money on myelin powder and anything that claims to heal nerve damage. A couple of things that my neurologist said would help is a diet slightly higher in fat and vitamin B.
I don’t think anything dealing with facial paralysis should be considered a mild case. I know some people in our local GBS community who have had a harder time with facial paralysis then some people who end up wearing APOs for the rest of their lives. Your face helps you eat, talk, and communicate. Facial paralysis is no small thing. On the plus side, there is a good chance that things will get better for you over time.
AnonymousDecember 16, 2008 at 10:14 am
Hello – I have much of the same problems as you with the face “not working”. Yes, there are facial pt’s – my pt sent a printed sheet home with me to follow each day of movements for the face. And speech therapy too. I learned on my own to practice in front of a mirror. I learned two things. First and most important is that your lack of movement is not as noticeable to others as it is to you;) . Next – learn to smile etc a new way. Practice it to get a point that looks natural but perhaps not your former expression. In my case – that is just gone. For photos – I have learned that I can “push” my face with my fingers – into a better pose and it will stay for just a few moments – long enough to snap the shot. My face hasn’t worked the same since 1993. You are still into early days of healing. With any luck – you will heal more. Who knows? You have read the threads here. If it is repeated once it is repeated a million times ~ GBS stands for GETTING BETTER SLOWLY. Good Luck.
AnonymousDecember 16, 2008 at 12:11 pm
I didn’t get facial paralysis but my voice has been affected. I’m doing voice therapy and I would suggest you see a Speach & Language Therapist , they can give you exercises and advice. I remember reading a post where somebody who had facial paralysis used a special device to stimulate the face muscles and also had face massage.
AnonymousDecember 16, 2008 at 8:04 pm
I never had PT, OT, Speech Therapy etc,,,,,,My neurologist insisted that I could/would get better on my own. I feel I have re-gained great strength in my arms and legs, but I am able to work those on my own with gym work outs and nice walks. My face is another story, and not sure what to do. Sometimes, I question if my Neuro knew what he was doing as I never ended up having plasmapherisis or IVIG either. It makes me nervous to tell yuo the truth! Thanks Again!
AnonymousDecember 17, 2008 at 11:01 am
The standard of treatment for GBS is IVIG or plasma pherises for all diagnosed cases if it is caught in the acute phase. If you receive treatment three or four weeks afterwards, it probably won’t do any good.
Another standard of GBS treatment is Physical Therapy. It would be a very rare case where therapy of some sort isn’t required.
Granted, I am only getting one side of this story, but I wonder if your neurologist is being your advocate, or is your neurologist trying to be a hero to the insurance company? I think you need to answer that question before you continue your relationship with this doctor. If you are stuck with this neurologist, then you need to ask why you weren’t treated, why you didn’t get therapy, and would this doctor treat their spouse the same way if the spouse had GBS.
I have heard some doctors say that they won’t treat GBS until the person is unable to walk. That is asinine beyond belief. Nerve axons can and will be damaged as long as your immune system attacks your nerves. Also, the longer one goes untreated, the more residual effects you will have. I don’t care to think this, but there are just some bad doctors out there, and there are also good doctors who are more motivated to make the insurance company happy. Either way, it is the patient who will end up suffering.
Okay, off my soapbox. You need to be your own health advocate. I hope and pray that you have the strength to be your own advocate.
December 18, 2008 at 9:12 pm
Mine was teated by a speech therapist using mild electric stimulation, and excercises on my own. I was in rehab hospital and had speech every day, so it was pretty intense. It must have worked becuase no one sees a half smile anymore. Keep at it.
AnonymousDecember 21, 2008 at 10:39 pm
I was diagnosed with gbs in May 2008 and I was paralyzed including my face
and I had movement in my arms and hands. Speech therapy was helpful
and I had physical therapy also. I was able to walk again in August 2008,
and in December 2008 I still have some weakness in my face. It makes it
a little difficult to eat, and hard to say words with b,p,and m in them.
Facial excercises help regain your face muscles.Try to do the excercises
for twice a day for 5 minutes. They involve smiling with mouth open or
closed ,trying to suck on a straw,moving only top lip while gently biting
bottom lip, and placing a lite wooden object between your lips and closing
as tight as you can and hold.A speech therapist would show you the
excercises and words to practise.HOpe I have been helpful to you.
AnonymousJanuary 4, 2009 at 10:16 am
8 years ago with GBS I had facial paralysis and was treated by an OT and speech therapist as well as using a TENS unit and by the time I walked normally again 13 months later to the day my face was back to it’s old self also. Most of it was better long before but everything was back in the end. Now with CIDP I have had some days where I think my face is going to end up paralized again but so far I have been lucky that way, it’s the legs this time to the point of being in a chair and I sometimes wonder which is worse!
I hope you can get the therapy you need and my thoughts and prayers are with you!
Good Luck to you!
AnonymousJanuary 29, 2009 at 7:25 pm
I had MFS in 9/07. The left side of my face was paralyzed. In the hospital, the speech therapist recommended finding a physical therapist who did electronic stimulation.
That’s exactly what I did once I got out of the hospital. I started out at 3x/week, and am now down to once every 2-4 weeks. The physical therapist also did massage and she does resistance training with my facial muscles (and gives me exercises to do at home – in front of a mirror for bio feedback).
I think it has all helped. My smile returned within 3-4 months, I could blink my eye shortly after, and slowly the muscle movement returned. I would say the recovery of my facial muscles was at about 90% within 8-9 months. I think I’m at about 95% recovery.
I’m sorry to hear that your doctors did not recommend any treatment. But maybe it’s not too late to try these treatments.
I know how difficult facial paralysis is, so I encourage you to keep up your spirits, and keep looking for solutions.
Please let me know how you’re doing.
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AnonymousJuly 29, 2008 at 11:22 am
Hi everyone. My girlfriend is on week 9 after being admitted to ICU for GBS.
She has been doing physio and starting to stand with a walker as well as several other excercises for her legs. She is concerned that her face isn’t coming along as well. She still can’t fully close her eyes and has to hold her lower lip closed when swallowing liquids. Her speech is much better but she is having trouble with a couple of letters like “d” & “m”. Does anyone have any insight to her situation. Any help appreciated. Thx.
AnonymousJuly 29, 2008 at 1:52 pm
This is unfortunately the way recovery works with GBS, in most cases the face is the last to recover, and often months down the line she may still have facial weakness. The fact that her speech has already come along is wonderful, and I know how frustrating it is not to see results more quickly, and while one does become discouraged it is important to realize that with GBS these things do tend to take a long long time. Also, very important that she doesnt try and overexcercise to try and get things working again, this unfortunately will have a negative effect. I’m sure that you may notice that when she has had a long tough day (i think all of them are long and tough) , more so than usual, you may find that her facial paralysis and speech actually become worse. My one eye still droops ever so slightly, and I slurr my words when I am very tired.
AnonymousJuly 29, 2008 at 3:09 pm
[B]She might respond to speech therapy also. Sounds like your girlfriend could have the Miller Fisher variation of GBS. She still needs speech therapy along with physical and occupational therapy. Tell her I wish her the best.
Also tell her that the folks here have a saying about GBS and it is “GET BETTER SLOWLY” there is no rushing this syndrome it takes a long time to conquer.[/B]
AnonymousJuly 31, 2008 at 9:39 am
I agree with the previous two posts, certain things take longer to come back than others.
For myself, my left lower lip still had not been able to flex on its own, or move downward, since GBS. The Dr. had a conduction study done and stated that I have some nerve damage done to crainal nerve #7. I don’t know what all that means, but I have a stiff lip, and droopy eye some times in the evenings it seems.
Hang in there, being a caregiver is a tough job, so be sure to take care of yoruself, too.
AnonymousJuly 31, 2008 at 9:49 am
The right side of my face has never fully recovered. It droops more than the left and my right eye does not close as tight as the left. No one notices it and I have never told/talked anyone about it, including my husband. I don’t think anyone has given it any thought, even me, although I have always been aware of it.
AnonymousJuly 31, 2008 at 9:57 am
Jupe, I have GBS and the Miller Fisher variant. It started with tingling in my hands and then migraines and then no eye movement and went down from there. I’m told GBS ascends, while my condition descended. I ended up with a distorted face, no speach, no swallow, a feeding tube, luckily no vent, but then weakness in all limbs. It took months to get back my swallow and speach and the distortion in my face and even walking without equipment. I was diagnosed 6/11/07 but had some symptoms at least a month prior to going to the ER. And it wasn’t til November 07 that my neuro said he saw some improvement in my face and by May 08, he could hardly see anything wrong. My speech returned slowly but like others have mention, when tired my speech gets slurred. It’s a slow recovery. And when I find I have some energy and try and do too much, I pay for it the next couple of days. Keep talking to her, keep hugging her, keep reasuring her and let her know you need the same. Best wishes!
AnonymousJuly 31, 2008 at 11:10 pm
Thanks for taking the time to reply everyone. She is doing a really good job in her recovery.It’s been 9 weeks since she was admitted to ICU. It took her about 6 days and a few trips to the doctor and hospital until she was finally taken serious. The initial diagnosis at the hospital was “stress” and she was given Ativan and told to go home and rest. She then went to the doctor and after telling him that she was falling down,he gave her a walker to hold herself up. It got to the point where she could barely walk and was taken back to the emergency. The doctor gave her tylenol for back pain and it wasn’t until the water was dribbling down her chin that they finally took her serious as her lips were numb and she had trouble swallowing. The next doctor on the shift change was 95% positive that she had GBS and a spinal tap confirmed it as well as the nerve tests a couple of days later. She has come along way from being paralyzed from the waist down and having a feeding tube in for 5 weeks and facial paralisis. She is actually walking with a walker and is walking unassisted in the pool. She can now move her eyebrows
but as I stated is still having trouble in her face/eyes. Her speech is coming along really well but I notice some slurring at the end of the day,especially after being in the pool and doing her 1 hour physio.I do give myself some time
to take care of myself but I get so encouraged watching her move forward.
As funny as it sounds she was so excited last week when she was able to get herself on the toilet from her wheel chair without any help from anyone.
Today was a huge day as she was able to do almost 2 laps in the ward with the walker where as she started using the walker a few days ago and was doing 1 lap. This website has given me great advice to pass on to her,especially not to over do things. Laurie is working so hard to get back to normal and achieve independence and I hope for her sake that her facial muscles start to return to normal. Take care. Jupe
AnonymousAugust 1, 2008 at 12:17 am
Jupe, this sounds very encouraging! Just remind Laurie to go at it slow. Push a little bit but not to the point of exhaustion. Overdoing it can do more harm than good. She needs to find the pace that works for her, rest often and she will see improvement. As to being excited over the bathroom thing…I can totally relate! It is an accomplishment!
AnonymousAugust 1, 2008 at 8:41 pm
My name is Laurie as well, and my GBS is still residing in my face. I had a much milder case than what you are saying your girlfriend has, but can understand the facial aspect (mine landed big time there). For me, I felt like everyone looked at me because I looked funny, was hard to understand and plain felt ugly. No matter how much people said I looked and sounded ok; I did not think that I did. My recovery was easy compared to most folks on here, but 6 months later my face is still not right. People try to say because I had a big smile before, that I feel I don’t look like me. I also find that I think people are staring at me when I talk because the upper part of my face does not move; I am sure they looked before GBS. I just think this makes you more self conscious in many ways. From one Laurie to another; stay positive. I truly think that helped me get better faster! Each day gives you new goals and achievements!
Good luck and take care!
AnonymousAugust 1, 2008 at 11:39 pm
I had GBS Miller Fisher Variant … first symptoms were loss of peripheral vision, slurred speech and pins and needles in my hands. Mine progressed very quickly to full paralysis and on a vent within 48 hours.
It was my speech that led to the diagnosis of GBS – the ER doctors thought i was overreacting but a speech pathologist had a look and confirmed my palate wasnt moving and it was most likely a neurological problem.
At first i was unable to open my eyes then i had double vision. I cant remember which cranial nerves were involved, but i know initially i couldnt raise my eyebrows or smile. basically the only normal movement i had was my tongue (and amazingly i retained my sense of taste). By the time i left hospital after 7 weeks the only lingering problem was double vision and that came good by itself a week or two later.
I had a trachy for several weeks so it wasnt until week 4 i think that i was able to try and talk again. Funnily enough, my voice was perfectly normal. I guess it is just a matter of waiting to sow long it takes for nerves to heal and there is no set pattern or timeframe (although i was told it was not uncommon for the first areas affected to be the last to come good)
Speech pathologist should be able to give her exercises to work her mouth muscles. It is a fine line between keeping the nerves and muscles working and overdoing things – if slurring etc get worse, take that as a sign to rest.
Rest assured there is light at the end of the tunnel. I have just had my 2 year anniversary and i have recovered 99.9% and pretty much able to do everything that i did before.
AnonymousAugust 9, 2008 at 2:06 am
I’m sorry to hear about your girlfriend. I got MFS last September from the campy bacteria. I, too, had facial paralysis on one side. I wore a patch for double vision and taped my eye because I too couldn’t blink. And I had the same issue with liquids escaping my lips. I also couldn’t smile. Oh, and I had trouble pronouncing B’s and P’s.
Tell your girlfriend to keep the faith. This will all go away eventually. It has taken some time for me – but the progress has been gradual. The double vision resided and my smile returned within 3 months. By four months I stopped taping my eye. The water dribbling subsided probably by month 5 or 6, and that’s about when the language improved, too. At this point, I’m pretty much back to normal. The thing to keep in mind is that it does take time – like everyone says. It’s a very gradual thing, so tell your girlfriend to make friends with patience. 🙂
I would recommend physical therapy where they can do electronic stimulation. I also got laser treatment and accupuncture (to boost my immune system), but if she can at least get some e-stim, that might really help improve her muscle strength. They will also show her some exercises she can do on a daily basis. It all really helped me. To give you an example, early on my physical therapist was focusing on my eye muscles. As soon as he started focusing on the muscles around my mouth, they started to improve (but not too much before then) – slowly but surely. I can only tell you what helped me. I know from reading this forum that everyone has their remedies. But if it worked for me, it might work for her. So don’t give up, and tell her not to give up either.
All my best,
AnonymousAugust 9, 2008 at 10:06 am
Thanks Paula. She just got admitted to GF Strong which is a rehab centre in Vancouver. She is doing speech therapy twice a day as well as occ. therapy and physio twice a day. They also have cooking classes, art classess and swimming etc. They just got rid of her wheel chair and she is using a walker with wheels so she is coming along. Did you have paralysis any where else
other than in your face? Jupe
AnonymousAugust 22, 2008 at 12:14 pm
Jupe – that is great, sounds like she’s making great progress! Also sounds like she is getting some good medical care. How’s her facial paralysis coming along? Have they used electronic stimulation?
I didn’t have paralysis anywhere other than my face. Lucky for me, I guess. I had the regular GBS, too, (probably a mild case) because I had autonomic nervous system problems (extremely low heart-rate and blood pressure). But there are plenty of people on this forum who have had paralysis throughout the rest of their bodies, and who can probably provide some insights on their treatments and recovery times.
AnonymousAugust 22, 2008 at 4:58 pm
I am so glad to hear your girl friend is doing much better and continuing to show improvement. Kind of strange how you mentioned the ER visits and doctor’s visits. The attack on my nervous system in June, I went to 2 different ER’s and one gave me Ativan and the other one gave me Tylenol with Codiene. Then saw my old Rheumatologist and he got pure ignorant with me. Told me to go to the ER. My regular doctor took me in with care and referred me to see a Neurologist and new Rheumatologist. The new Rheumatologist… ify about him but the new Neurologist decided it was time I saw someone at Duke. Still on waiting list! So I am so glad that somebody took her seriously and started treating her!
One thing I can’t understand! We have these doctor’s going to medical school for all these years in college. But alot of them go into certain specialties. Becoming a specialist in one certain field. Are they even teaching these doctors all the different medical diseases out there? Giving them the knowledge that they need to really diagnose a patient! Not one single doctor I have ever seen has given me a spinal to check for elavated proteins. For me to have nervous systems problem you would think that would be their first option of testing.
I remember years ago seeing alot of exploratory surgeries because patients were being hard to diagnose. And many doctors found the problems with alot of patients. Now they rely too much on MRI’s and Labs. They see nothing in your labs or MRI and you are labeled having stress! No wonder so many are not getting diagnosed. And the worst part is having an ER department now where too many uninsured hit causing overcrowding in the the department and the poor doctor is doing nothing but relying on those labs. Because he don’t have time for nothing else.
And I hate to say it! But we have too many running to the ER for minor injuries that really are not ER issues. The other night when I was in the ER. There was a girl there that got her mouth popped from a fight. I did not see any gash in her lip. No broken teeth. Just a swollen lip! 5 people were with her all laughing and cutting up and being noisy in the ER waiting room. That was a wasted spot! Then some guy sitting on the other side of me and me husband was sitting there with his foot hurting! No swelling and was walking on it and the only reason he was probably there was to get a doctors note to be out of work a few days. Another wasted spot!
And too many abuse going to the ER for things that can be treated at home. And what it does is cause problems for patients like your girl friend and myself and many others that really need diagnostic time. And I see it getting worse instead of better!
But anyway! I wish you and your girlfriend my very best. Sounds like she is a fighter and trying really hard to get well again! May she recover soon!
AnonymousAugust 22, 2008 at 8:14 pm
Paula: Hi! Laurie is doing very well.She has been in the rehab centre for 2 weeks. The first thing they did was get rid of her wheel chair and have her use a walker. She has been walking for about a week now but gets very sore at the end of the day from nerve pain. She hasn’t had to use the walker at all. She is doing speech therapy and the left part of her mouth is starting to “loosen up”, so she is half smiling. I think it’s a matter of patience and time. They have given her a check out date of Sept. 5 at which point she will do some out patient physio and speech therapy. They haven’t used any electronic stimulus on her face but have given her a series of excercises to do for her speech. She has also been chewing gum which she thinks is helping her mouth. The rehab centre is amazing. I see people in a wheel chair
or walker and the following week they are walking on their own. I would highly recommend that anyone that has GBS, and once able to start recovery, to get referred to a rehab hospital/centre. The hospital physio is a good start to get moving but can take a person only so far.This particular centre in Vancouver is very familiar with GBS and aiding a patient in recovery.
AnonymousSeptember 22, 2008 at 7:11 pm
Hi Jupe – So how is Laurie doing now that she’s been home for a couple of weeks? I hope well.
You may want to ask about electronic stimulation for her face. It helped me a lot! Because they could not do the e-stim on every area of my face that was paralyzed, they did it in pieces. As soon as they started a new area, I would see differences after only a couple of sessions.
Of course, I have been going for a year – there are no quick solutions – but I saw noticeable improvement with the e-stim.
Many physical therapy offices provide this service. After a year of e-stim, now that I’m down to 1 day/week, my doctor even got me a small (cell phone size) machine to do the e-stim, so that I can work my muscles on off days. My issues are down to function that only I can notice, but I am still working towards complete recovery.
I wish Laurie complete recovery as well!
AnonymousSeptember 22, 2008 at 11:57 pm
Hello Jupe ,
Just read your posts regarding your friend Laurie and hope she is doing better. Sounds like she is on her way to recovering. My name is Paula and I was diagnosed with GBS July 07, and also went through several different doctors and ER visits before finally getting in to see a Neurologist. It all started with severe upper back pain, so I thought I had pulled a muscle or had a pinched nerve. When a week had gone by and no relief with OTC meds, I decided to see a doctor (unfortunately, I couldn’t get in with my regular MD). At that time I was having mild tingling/numbness is my feet and hands also. She seemed to agree, and gave me muscle relaxers and pain meds. Well, the following weeks were pure H##L. I couldn’t seem to get anyone to believe me that something was terribly wrong…on the outside I appeared normal, but I was sure I was dying. The weakness, tingling, numbness got so bad that I couldn’t climb any stairs, couldn’t walk without holding onto furniture, couldn’t even raise myself off a toilet. I was even losing control of my bladder. And I think the worst was the fact I couldn’t sleep. In 4 weeks time, I only slept a total of 2-3 hours/day because of the back pain. I was literally a walking zombie. Then, one morning I started having trouble with facial drooping on the left side of my mouth and eye. Terrified, I was sure I had had a stroke. I called my youngest daughter (she’s a nursing student) and works at our local hospital. She immediately called a neurologist she knew and got me in that morning. He admitted me to the hospital for overnight observation. After they performed blood tests, they found that my thyroid stimulating hormone was completely off the charts (hypothyroidism). Also, my blood pressure was extremely high. They gave me meds for both and sent me home. After another week, I was even worse and returned to the Neurologist. Because of the hypothyroidism, which can cause similar symptoms, he didn’t suspect GBS because it is fairly rare. He re-admitted me to the hospital, did MRIs (to rule out MS) and a spinal tap which confirmed the GBS. I was given IVIG treatment for 5 days. Luckily, I didn’t need a vent. It took me several months following treatment to regain MOST of my strength. The back pain, numbness and tingling slowly resolved also. I still have residual problems of slight numbness and tingling in my fingers and feet 14 months later. They tell me it could take as long as 2 years to heal, and may still have some symptoms.
After finding this site and reading so many of the posts here, I realize that I am actually one of the luckier ones…So many have the more serious, recurring cidp, etc and my heart goes out to them and their families. As told by most of the others who post here, it IS a slow recovery. After I was diagnosed, so many people have told me of friends and family that have had GBS or one of it’s variants and the difficulty of getting diagnosed.
Please let your friend know that she is in my thoughts and prayers.
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