Gullian-Barre Disease
Thank God it had not progressed to the major organs, heart and lungs, but he now lays in a hospital bed unable to walk. His face is numb, lips are dry, cracked and bleeding, every part of his body that this disease has affected is now numb. He was thankfully transported to IU medical hospital for treatment, where they had, I believe it was 5 vials of the medication necessary to treat this disease with.? It could take a couple of days or a couple of years. They don't know. But, he will have to learn to walk and talk again due to this. Please pray that he be healed, BUT God's will be done. Thank you!!! Has anyone ever heard of, or had the misfortune of dealing with this disease? I'm curious because one hospital says its very rare, another says its a lot more common than people think. So,....... which is it? I'd never heard of it until my next door neighbor died with the disease this past year. I'm very curious about this now since it's suppose to be caused from an infection, usually lungs (neighbor) or intestinal (friend). It also deals with the immune system. My husband suffers lung infections constantly, sooooooo if anyone can inform me as to the most updated info on this disease I would appreciate it for our friends sake, or anyone else that may encounter the paralyzing disease. Thanks!!! |
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| Yeah, I read a book about this back in 1992 (or 93) called No Laughing Matter (Paperback), by Joseph Heller, Speed Vogel. Speed is a friend of Joseph Heller, author of "Catch-22,." One day Joseph Heller was having difficulty putting on his sweater. He called his doctor who had him rush to the hospital, where he spent the next X months, with Speed helping with his daily needs.
Joseph lost his ability to do everything except breathe, and that was just barely. He wasn't aware that they were concerned about his breathing until after the crisis had passed, he would have been unhappy if his only method of communication (barely talking) had been taken from him due to the need to be on a ventilator. Another celebrity who has recovered from this disease is Andy Griffiths. I also think this disease is sometimes called an "upwardly spreading paralysis", since it starts low and works it's way up. Fortunately, most people either fully or nearly fully recover from this "temporary" paralysis, or so I thought. Edit: I looked this book up on Amazon, and it turns out that Speed is listed as a co-author with Joseph Heller. No Laughing Matter (Paperback), by Joseph Heller, Speed Vogel I guess that's a nice "thank you" for being a friend indeed. Further edit: I didn't recall until I just read a review of this bok that the authors actually alternated chapters. So I guess co-author wasn't just a thank you. Even further edit: Here is a good page to read from a good site: http://www.gbs.org.uk/info/gbs.htm |
| Thanks Ron!
Pam |
| I knew a gentleman who had this and mostly recovered. He continued to rely on a cane, sometimes two canes, but it was far better than being totally paralyzed and on a ventilator. |
| During the mid 70s, there was a significant increase in the number of cases of G-B across the US. It was attributed the flu vaccine, though never proved. At one point, over half of the patients in ICUs had G-B. We never had a patient die from G-B in our hospital, in fact in our state.
The treatment was basically support the patient until the virus ran its course. Here is some info from the National Institute of Neurological Disorders and Stroke: Guillain-Barré (ghee-yan bah-ray) syndrome is a disorder in which the body's immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances, the weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until the muscles cannot be used at all and the patient is almost totally paralyzed. In these cases, the disorder is life-threatening and is considered a medical emergency. The patient is often put on a respirator to assist with breathing. Most patients, however, recover from even the most severe cases of Guillain-Barré syndrome, although some continue to have some degree of weakness. Guillain-Barré syndrome is rare. Usually Guillain-Barré occurs a few days or weeks after the patient has had symptoms of a respiratory or gastrointestinal viral infection. Occasionally, surgery or vaccinations will trigger the syndrome. The disorder can develop over the course of hours or days, or it may take up to 3 to 4 weeks. No one yet knows why Guillain-Barré strikes some people and not others or what sets the disease in motion. What scientists do know is that the body's immune system begins to attack the body itself, causing what is known as an autoimmune disease. Guillain-Barré is called a syndrome rather than a disease because it is not clear that a specific disease-causing agent is involved. Reflexes such as knee jerks are usually lost. Because the signals traveling along the nerve are slower, a nerve conduction velocity (NCV) test can give a doctor clues to aid the diagnosis. The cerebrospinal fluid that bathes the spinal cord and brain contains more protein than usual, so a physician may decide to perform a spinal tap. Guillain-Barré syndrome can be a devastating disorder because of its sudden and unexpected onset. Most people reach the stage of greatest weakness within the first 2 weeks after symptoms appear, and by the third week of the illness 90 percent of all patients are at their weakest. The recovery period may be as little as a few weeks or as long as a few years. About 30 percent of those with Guillain-Barré still have a residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack. |
| Thanks for the additional information! This syndrome is horrible, as are others, but.......... it is just such a shock for their families, and especially for those getting hit with it. Movement one day and paralyized the next for seemingly no reason. Soooooooo sad. |
| I am praying for your friend. I have never even heard of this disease before!!
Gosh it sounds terrible for anyone suffering it.  |
| What a terrible illness. Prayers definitely being said. |
| Sounds horrible... I hope he recovers quickly, and fully. |
| My thoughts are with your friend and I'm so sorry to hear anyone has to go through this horrible disease.
Marianne and the boys |
| Thank you for your concern and prayers. This morning he woke up confused as to where he was. He got out of bed and WALKED to the window. He opened the window and was standing there when a nurse came in and asked him what he was doing.
He told her he was just standing there. She asked how he got there and he told her he guessed he walked there. She asked since he'd done that, did he think he could walk to the bathroom. She got him a walker and he DID! This just doesn't happen this way. They were so shocked, but very pleased! PRAISE GOD! Thank you!!! Miracles happen every day. I can't wait to hear from the family again tomorrow about his progress! |
That's great news!  |
| Thankfully your friend has started his recovery!!!!
One of the girls in my dance class had this. She presented with flu like symptoms and rapidly became fully paralyzed. Her movement gradually returned but she lost a lot of muscle mass. There is a high probability of relapse if she does not stay active or starts to eat poorly. I hope that your friend is able to make a full and fast recovery. It seems like he was not down long so hopefully his recovery won't take too long. Make sure they go over discharge and maintenance instructions with him and that they write down everything that he needs to do to maintain himself. Good luck!!!!! |
| I talked with our friend again today, and it seems that as of now he'll need about a year of extensive physical therapy, three times a day. He'll be moved closer to home tomorrow which will make it easier on his family.
He was pretty depressed today. Seems he still has no feeling in one arm and the opposite leg, along with one side of his face. He still talks and sounds like someone that's had a stroke. Just wanted to ask you to keep him in your prayers. Thanks soo much! |
| My prayers go out to your friend. My grandmother succumbed after a long fight with it last year.
He has a long uphill fight, but with support he can do it. |
| I am sorry that your friend is going through that. I was diagnosed with guillian barre this year on April 20. It is a difficult battle yet the positve side to it is that unlike M.S. there is recovery. For some people the recovery is fast and for others it is slow. I have been on a slow but stady path. I could not move my legs arms and was on a feeding tube and half of my face was paralized and therefore could not be understood when I spoke. I have full recovery of my face and arms. I have gone from wheel chair to walker to now cane.
Please tell your friend to be patient take it one day at a time and to think there is a light at the end of the tunnel. |
| Thank you for you information. I'm so sorry that you are dealing with this horrible syndrome!
They say its rare, but 1 in a 100,000 isn't that rare when you consider the total population. Now that I know about it, I know 2 people in a years time with it, plus those mentioned here. It is well worth studing this a bit to know the symptoms, etc.... in case it hits your family. Thanks for the PM. Will connect him with you ASAP! You're so kind to take the time to discuss this with him. As you well know, its one thing to be told things while this is going on, but being able to discuss it with someone thats experienced it is more comforting and reassuring. May God bless you with a complete and speedy recovery! |
| Pam,
How is Mike doing? Mia, how are you doing? |
| Thanks for asking, Ron.
We had been taking him to therapy twice a week, but just about a month ago they told him they'd done about all they could do. If he was going to regain any further muscle strength it would have to come in time. So, he now does his exercises on a daily basis at home. He's mostly using his cane, but has a bad day once in awhile where he needs his walker so he can sit & rest, plus the additional stability it offers. He can walk like we do naturally, but he has to focus on where his feet are because of the numbness that remains in his feet. But, overall he's doing great! Wears him out, but he's made it out to the tractor to mow part of the lawn a couple times. His speech is fantastic. He was having to break words into syllables (to a point even 1 syllable words), but he now spits em' out faster and concentrates on the sentence, rather than each word. He's such a clown, comes off with things all the time that has you rolling on the floor and it's soooo nice to have that back. He's very determined and works hard at regaining what he's lost. The constant mental focusing wears him out, but nothing like it did. His spirits are good most of the time, and most importantly he has faith in God to get him through this. Plus, he was also able to discuss this with Mia. That helped him a lot! He was/ is very grateful for that! |
| my husband had full blown GBS can sympathise if you need any info just shout
huggles b-eye |
b-eye wrote: my husband had full blown GBS can sympathise if you need any info just shout huggles b-eye
I'm curioius if you know of anyone else that lives near you, or you came into contact with, that suffered from this within 6 months to a years time, and if so, what may have been common factors??? I'd never heard of it until my neighbor got it, then Mike, and there was a relative of his DIL that also had suffered from this. My sympathies to your husband, you and your family for the nightmare you've been through! Hope he had/has a full recovery. |
| http://www.gbs.org.uk/index2.shtml this group is very helpful no one else had it when my husband did but we have heard of people since , we are both counselers for this group
huggles b-eye |
| I am 33 years old with 3 young children.
I got in the bath 1 thursday night and all my toes went numb, cut a long story short by the monday morning i couldnt walk!!! Very very scary, i didnt no what was wrong, I went to A+E and had a few test done...I was diagnosed straight away with Gullian Barre Syndrome. I was taken straight to the high dependency unit. Within in a week i was completley paralysed and taken into intensive care and ventilated. I was in ITU for 4 months, I didnt see my children for 13weeks which was awful. As time went on my body started to get better, I was transferred to the stroke unit, where I met lots of nice people, nurses and patients. Slowly my feeling has come back...i had to do alot of physio, basically ive had to relearn to do everything. Sitting walking just everything you take for granted ive had to learn to do again. But, if im honest it was a really horrible thing to go through but it made me re asses my life and put alot of things into perspective. And it has made me a stronger person. I still dont have feeling in my feet but im sure it will come back. Im still doing physio and getting stronger everyday. |
| A friend of mine had this about 10 years ago. It was really horrible. He slowly (very slowly) recovered. But it was a long, painful recovery. My prayers are going out to your friend. |
| Hi
I hope everyone with this syndrome is doing ok. I am recovering from Gullian Barre Syndrome, I have only recently come home from hospital. The lead up to me being diagnosed was I had the flu for around two weeks where I was unable to get out of bed. After I got over the flu within a couple of weeks I was starting to lose my balance, couldn't empty my bladder and finally was passing out everyday. I was hospitalised and treated with Octagam for 5 days which seemed to do the trick, then I was sent home. After another 2 days at home I relapsed and ended up back in hospital for another month. Same thing treated wih Octagam and then was monitered for the remaining time. Recovery is very slow for me, especially when the weather gets warm I just cant seem to function. Good Luck to everyone who does not have thier health and is suffering. Merry Christmas |
| I hope those who read this understand my intention and gain hope and comfort rather than resentment. There are many people that have suffered permanent damage and death through this syndrome and to those I apologise in advance. 10 years ago I was hospitalised including total paralysis (trachi etc.) through GBS for 7.5 weeks. I cried many times. Now I can say that apart from my wedding day and the birth of my children, this was the best experience of my life. I have had the privilege of seeing life from a rare perspective. I have seen my family and friends respond beyond the call of duty, seen how immaterial some things really are and experienced true unconditional love from my wife.
I am lucky. I have negligible numbness in my feet and face, an inability to ride roller coasters more than once in 20 minutes without motion sickness and the same beautiful wife I had 10 years ago. I am not naïve enough to not realise that GBS actually changed nothing for the better except my perception, but I would not change anything. Easy to say after a full recovery, but most of us do make a full recovery. Please do not give up and do your physio without fail. There are no magic bullets. |
| Thoughts and prayers for your friend. |
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