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Guillain-Barre Syndrome
Biology 202
2003 First Web Paper
On Serendip
Guillain-Barre Syndrome
Amelia Turnbull
Most people do not expect to become paralyzed during the course of their lives. Barring injury to the nervous system or debilitating disease, one does not expect to lose motor function. In spite of these expectations, people of all races, sexes, ages, and classes can be afflicted with a debilitating syndrome that can lead to difficulty in walking or even to temporary paralysis in the most severe cases. This syndrome is known commonly as Guillain-Barre Syndrome, or GBS.
GBS is an inflammatory disorder of the peripheral nerves. When the syndrome occurs, the body's peripheral nerves become inflamed and cease to work due to an unknown cause. (1) (3) Around 50% of the cases of GBS appear after a bacterial or viral infection. (1) The syndrome can also appear after surgery or vaccination. GBS can appear hours or days after these incidences or can even take up to three or four weeks to appear. (4) Some theories propose that GBS is caused by a mechanism of the autoimmune system that prompts antibodies and white blood cells to attack the covering and insulation of the nerve cells, which leads to abnormal sensation. GBS is considered a syndrome rather than a disease, because its description is based on a set of symptoms reported by the patient to her doctor. (5)
GBS is also known as acute inflammatory demylinating polyneuropathy and Landry's ascending paralysis after Jean B. O. Landry, a French physician who described a disorder that "paralyzed the legs, arms, neck, and breathing muscles of the chest." (4) (1) GBS was named after French physicians Georges Guillain and Jean Alexander Barre who, along with fellow physician Andre Stohl, described the differences of the spinal fluid of those who suffered from the syndrome. (5) The syndrome affects one to two people per 100,000 in the United States, making it the most common cause of rapidly acquired paralysis in this country. (1) Some patients initially diagnosed with GBS are later diagnosed with chronic inflammatory demyelinating poly[radiculo]neuropathy, or CIDP. (Sometimes radiculo is left out of the name, hence the brackets.) CIDP was initially known as "chronic GBS," but is now widely considered a related condition. (3)
Although patients can be preliminarily diagnosed with the syndrome based on an analysis of the physical symptoms, two tests can be used to confirm the diagnosis of GBS. The first is a lumbar puncture, or spinal tap, in order to obtain a small amount of spinal fluid for analysis. The spinal fluid of those with GBS often contains more protein than usual. The second is an electromyogram (EMG), which is an electrical measure of nerve conduction and muscle activity. (3) (4) The symptoms of GBS begin with numbness and tingling in the fingers and toes leading to weakness in the arms, legs, face, and breathing muscles. The weakness begins in the lower portion of the body and rapidly moves upward. This weakness eventually leads to loss of sensation in the affected areas; although a number of cases are mild, temporary limb paralysis is not uncommon. In the milder cases, the numbness can only cause difficulty in walking, "requiring sticks, crutches, or a walking frame." (3) Pain is not uncommon, and abnormal sensations, such as the feeling of "pins-and-needles," can affect both sides of the body equally. Loss of reflexes, for example the knee jerk, is common. (1) (3) Most patients are at their weakest point about two weeks after the onset of the symptoms, and around 90% will have reached their weakest state three weeks after the onset of symptoms. (4)
The progression of the syndrome is unpredictable, especially in the early stages, and patients may preemptively put in the hospital to be cared for. (1) In the more severe cases, patients require hospitalization and a stay in the intensive care unit in the early stages of their disease, especially if they need the assistance of a respirator, or ventilator, to breathe. In about a quarter of the cases of GBS, the paralysis moves up to the patient's chest, requiring this assistance from a respirator. The face and throat may also be affected by the paralysis, necessitating a feeding tube through the nose or directly into the stomach. (3) The period that the patient is afflicted with the syndrome can be extremely long and long-term hospital stays are not uncommon. Care is generally confined to supportive measures to the patient as the condition improves spontaneously, and efforts are made to speed recovery of nerve function, including physical therapy and hydrotherapy. Most patients eventually recover and go on to lead normal, or very near normal lives. Some patients, however, may remain partially paralyzed and require the use of a wheelchair for a long period of time. (1) (3) Around 30% of GBS patients still feel residual weakness three years after the onset of symptoms. (4) Death due to GBS is highly unlikely with modern medical practices, but death does occur in about 5% of the cases. (3) For those with CIDP, the course of the disease is generally longer than those with GBS and the recovery period can follow a recovery/relapse cycle, but the patients are less likely to suffer respiratory failure. (3)
The syndrome came to brief public attention in 1976 when a number of people vaccinated against Swine Flu were stricken with the syndrome. (1) A Minnesota doctor had reported to his local health board that after inoculating a man for Swine Flu, the man had developed GBS. The health board reported this the Center for Disease Control, who were running the Swine Flu vaccination program, and the CDC began to ask doctors to report cases of newly diagnosed GBS. It did not take long for doctors to begin to associate GBS with the vaccine, even though the CDC tried not to relay this impression. As GBS is difficult to diagnose and has many symptoms similar to other neurological diseases, doctors at the time might have been more likely to diagnose patients who came in with muscle weakness who did receive the vaccine with GBS more often than those patients who presented muscle weakness and did not receive the vaccine. As the CDC could not say with certainty that the flu vaccine was not causing the high number of cases of GBS, the CDC announced cessation of the vaccination program on December 16, 1976. To this day, some people avoid flu vaccines because of this one incidence of extreme side affects. (2)
In the end, a person with GBS may eventually fully recover her motor function to the level it was before her affliction with the syndrome. While she may be left with no physical reminders of the disorder, she and her family and friends will always remember her sudden incapacitation. The emotional scars from such an incident can last a lifetime.
References
1) Guillain-Barre Syndrome International - GBS: An Overview, An overview of GBS on the website of the Guillain-Barre Syndrome Foundation International, based in Wynnewood, PA.
2) Kolata, Gina. Flu: The Story of the Great Influenza Pandemic of 1918 and the Search for the Virus That Caused It. Simon & Schuster: New York. Pgs. 167-185.
3) Guillain-Barré Support Group, The homepage for the Guillain-Barre Syndrome Support Group based in the United Kingdom. The organization disseminates information to sufferers of the syndrome and their family and friends.
4) NINDS Guillain-Barre Information Page, National Institute of Neurological Disorders and Stroke information page on GBS.
5) GBS - An Overview For The Layperson, An overview of GBS written by Dr. Joel S. Steinberg, a neurologist that once suffered from GBS.
Comments made prior to 2007
Hello
I was reading the comments on GBS. In 1975, August I came down
with GBS and with in two days of the onset I was in a coma. It
only lasted for two days and the nightmare began, I spent 6 moths in
intensive care and two years in rehab. I lost all functions,
breathing, talking, closing my eyes, you name it I lost it. I was
told to be grateful I had such a strong heart. I was told several
times I was going to die. I went from 120 pounds to a mere 48,
looked like bones drapped in a sheet. To this day I am doing so much
better. I have had 5 surgeries on my feet, they hurt all the
time. I can't straighten my legs out while sitting on the floor,
I can't put my hands out flat and apply preasure, I can shut one eye
and not move the other, it looks much like an owl. I have muscle
cramps often. My doctors say my body goes in cycle, I'm good for
a few years and poof I need surgery. I have no spare parts.
I'm so greatful for what I have. God truly kept his hand on
me. I was in St John's hospital in Springfield Illinois
1975-1976. They took such wonderful care of me, I was 21 when it
hit. I had not been ill. It came in my feet and I kept
falling by the next day it was all the way in my hands, and that
evening I went into the coma. It took awhile for the diagnosis,
the first doctor I had thought I was faking and never bothered with
feeding tubes. Long story short I am good but left with residual
effects, 40% feeling in my feet and 50% in my lower legs. I can't
remember a day since that my feet have not hurt. I am a teacher,a
high school science teacher, and I am so grateful to God for this
opportunity ... Barbara Saathoff, 7 November 2007
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Comments
GBS
I was in the USMC for 6 yrs. (I am a girl). I came back from Japan in Jan1981.Two weeks later deployed to Ne!!is AFB in Vegas, passed out in hanger and was hospitalized for 6 of my 8 am deploy.I don't remember alot other than tubes, I was 23 then. Now I'm 65 and its back. The usual pads of feet,legs ,arms weakness, breathing, etc. I know I've had reoccurring episodes with little effect of pain ( like before) But, now OMG. No gardening, cooking, going out ( I look drunk). I also have other autoimmune disorders including asthma.....can u breath...H_____ No! Its not fun not being able to walk, pick up something let alone breath.
I was in 2 car accidents ( not my fault) and it started the snowball effect of autoimmune disorders. I also have Nutcracker Esophagus which spasms, causes heart attack like pain which makes my breathing impossible w/out a liquid med to numb. Also, 3-7 neck surgery from one accident which the sheaths are damaged and cognitive disorders roll in their with other disorders. I am or used to be a go getter and now I can't walk hosted write or do those things I love. Hearing the stories I pray a wheelchair never comes and the cane for drunken tickets (keep a note with you at all times of condition.... EVEN ON AIRPLANE... THEY WILL NOT LET YOU ON IF YOUR UNBALANCED) This sucks at my beautil,skinny prime of my life....BRING it on....I will recover how GOD sees fit..but we have good genes, i' be just been dealt a bad hand. You can get disability from USMC.Oh and they knew it was Viral in hospital and turns out Ziki Virus (misquito) gave it to me..rained alot. My prayers go out to all and lets pray for us all to feel as best we can. God Bless!
Pressurisation therapy treatment for GBS
Has anyone else tried pressurisation therapy for ongoing symptoms of GBS? (i.e nerve pains, leg weakness etc?) I've been offered it and considering taking it in the new year. (2019) I will keep you posted if it helps.
GBS Survivor
On October 2015 while in the shower I fell and was unable to get up. It too almost an hour before I could crawl to my cell phone for help. I was home alone because my wife was in hospital with fractured femur. In the hospital they diagnosed me after 4 days with GBS and gave me 5 units of globules. I was completely paralyzed for 3 weeks, could not lift a plastic spoon, had horrible back ache. I had pneumonia and had 4 liters of fluid removed from lungs. After 3 weeks, I had a little feeling in my hands and was transported to Air Force Village West in Riverside, CA., skilled nursing for rehab. Slowly my muscles started to work and after 4 weeks I could walk with a walker. Now 3 months later I am walking unaided but I am still unable to urinate and use catheters 3-4 times a day. I am an 85 years old male, originally from The Netherlands but lived in California the last 65 years. My wife and I now live in Brookdale, an assisted living facility, excellent. I like to know if my bladder function will ever return. In the hospital and begin of rehab, all my bodily functions quit. I am grateful for the fact that I recovered quickly. Thanks docs.
RE: GBS Survivor
Johan,
I am glad to hear you are recovering. I am not a doctor but I assume age has a factor in how the body will recover. However even though your older age may play a factor your recovery in general seems very quick compared to my experience and I was mid-30s when I was hit. It took me years to regain strength.
That and your strength to recover from the onset of pneumonia also seems like you have a strong disposition, so I would like to say in time your bladder function will indeed return, but who knows when and how.
The best would be to remember how lucky you are to have what you did get back, but I know that is not reassuring since people tell me all the time "at least I didn't die" or "it could be worse". These statements never help.
From what I know the bladder can be trained again and it does need practice, I hope for the best.
-Nate
Guillain-Barre cluster in 2015
I was diagnosed with Guillain Bar in February of 2015, fortunately they diagnosed it very quickly as they had a recent cluster of patents and realised quickly what it was. I was given an immediate infusion of Intravenous immuno globulin within four hours of it being diagnosed. I had two sessions of these over three weeks while in intensive care. I met two other patients who had the same diagnosis and treatment who came to visit on request of the staff to give me hope. The first one still very much in need of care and still not able to walk Months after the diagnosis and treatment and the second who had benefited from the previous diagnosis and was treated quickly in the same way I was had a fairly quick recovery. (As I did) still slightly symptomatic eight months on but definitely on the mend. It does seem the speed at which the illness is treated has a baring on the post recovery stage and very vigorous regime of physiotherapy moving and stimulating limbs and being held vertically by a hoist and machine daily for periods of time to keep circulation going with 30 minute bed turning when paralysis was at its worst,and intensive session with various teams (Speech, Dietician, Psychology, Physiotherapy, Occupational therapy and others ) . I've had a very good recovery because of the team's experience with it. Early intervention, intensive care regimes seem to be key to a better recovery but someone should do a study on this to help produce the best outcome.
I still have after effects of GBS
Hi,
I had suffered GBS in 2001 and recovered after being admitted to hospital. But even after completely out of the diseases i still have after effects of it like my hands and legs shivers always.
Yes the dreaded "Shivers"
Neethu,
I have the same ongoing issue, and it is enough to drive me crazy. For me that constant feeling is frustrating as well, it results in short temper and affects every minute of my day. As long as I stay active and busy I can be distracted enough to make it go away from my mind, but the more active I get in the day the worse the tingling later. For me the only relief has been ongoing accupuncture from a GBS knowledgeable neurologist and it really seems to help.
Regardless it is a horrible ongoing issue and I feel for you and your experience. Hopefully you may have an opportunity to try accupuncture and gain some relief as I have.
-Nate
I have a friend who recently
I have a friend who recently passed away from Guillen Barre syndrome after fighting for 4 years. They say she got it from a blood transfusion. Now her family is unable to afford a burial. Is there anything her family can do.
AFTER EFFECTS OF GB
I contracted GB 13 months ago after a flu injection but recovered enough to function almost normally.
My problem at the moment is that I get bouts of "virus attacks" whereby I am "overheated" and render me sick with severe cold attacks ans hot flushes.This causes my glucose levels to go sky high. (I am a diabetic),as much as 21.
I thus take it that the virus/bacteria is still somewhere active in my body? Do someone know of any research being done or something to use to counter these effects plse??
Johan (South Africa)
After effects of GB
Hi Johan. None of us are experts, just want to offer support. What you describe could be a continued effect of having had GBS damage to nerves. It wouldn't be live virus, as GBS is an immune reaction to something else. However, your situation could be a chronic inflammatory reaction, but whatever it is, you should be properly evaluated and diagnosed, as diabetes is nothing to mess around with! Go back to neurologist and ask for a re-evaluation.
GB syndrome
Nine years back I suffered with GB syndrome.80 percent I recovered but still I am not able to walk properly. I am not able to sit properly.so pls can any tell me .can I walk proper pls give solution
i count my blessings
every day is a blessing and celebration. I was totally paralyzed, eyes floated, near death experience went down to about 80 lbs. I was blessed with great nurses, a truthful but painful neurologist, and family ( my friends are considered family)
when I contracted GBS very little was known, the year was 1974. My doctors showed me the paragraph in the medical journal, and told me, we were all about to learn about GBS. My limbs were not functioning, but I could breathe, talk, even sit up went into ICU for observation. The disease rested after about a week and I was set up on the floor. In two more days I was back down in icu struggling to breathe a ventilator was needed. " I was escorted out of my body, watched doctors work on me and had a "moment" I cannot express in words" Then I looked up to see and hear a priest praying over me. I learned patience, more about compassion, and what should be the important moments in life. I had to learn to "sit up, roll over, talk use my fingers toes.. all like a newborn. listen more to others. Everyone of us "has a story" I hope your story had taught you about blessings as mine has. Yes it's a terrible thing to happen at any age.. for me I was just 25 finally achieving some success in entertaining, but I never have wished it had happened to "someone else." I am grateful for the wide eyed optimist gbs helped to create . Share your experiences with others help them become more optimistic about what can be accomplished and overcome! Share
4 1/2 yrs after GBS
Hi. In June 2010 one toe went numb. I immediately scheduled dr apt and a couple days later went to dr and they scheduled appt with neurologist which was a couple weeks later. By that time I had suffered severe back pain and could barely walk. The day of appt with neurologist I was diagnosed and admitted to hospital for ivig treatments. Spent two weeks in hospital and was on the rough road to recovery. Full recovery is def not FULL recovery. While it was horrible I finally ended up only having issues with nerves in feet...but it's 24 hrs a day. gabapentin helps a little. The strange thing I've noticed is that last summer I started getting cramps in my feet. And then I noticed that this summer the cramps have worsened. I get severe feet cramps if I fkex or point feet when lying down or when lying down on side. I have started getting leg cramps as well. Is this normal? Anyone else experience this? Thanks
RE: 4 1/2 years after GBS
Kristie,
Its been 4 years and a month since my GBS started and it wasn't until this year did the pain and parathesia become very bad. I too agree that full recovery is not going to be full. Gabapentin for me is not an option and I tend to take advil all the time. My concern was that the pain in my whole right side was becoming unbearable, not necessarily cramps but more like shooting pains. I am going to see a new Nuero doc in early Dec to hopefully get more answers and possibly alternatives to gabapentin.
After GBS
Hi Kristie, I had GBS very mildly, wasn't even sure I was ill, but after a flu injection, I became quite unable to walk. It has improved a bit, but not a lot. I, too, have cramps in sides of my feet, instep, and along sides of lower legs. I also get them when I point my toes. My experience has been that if I do too much, they react by complaining in this way, or, if I have done very little, they get crampy. You might try a bit of modest stretching and exercise to keep muscles moving, but not so much as to tire them out. I imagine it is caused by nerves getting irritated and misfiring! Anti-inflamatories seem to help, if you can tolerate them. Nothing about GBS is normal. Just deal with each thing as it comes up. Unused muscles tighten up and cause pain. Overused ones do the same. Good luck.
After effects of GBS
After a working trip to Kenya in November 2013 I developed tingling and numbness in my hands and feet. By January I was having difficulty walking and I had no feeling below my waist. I was admitted to hospital with a suspected trapped nerve. After 5 days spent googling my symptoms, I suggested to medical staff that it could be GBS. I received 5 immunoglobulin infusions and began to recover. I spent three weeks in hospital. In May I had to return to hospital to receive another course of immunoglobulin. Now, September 2014, I am slowly returning to work, I'm a primary school teacher. The residual symptoms that I suffer are pins and needles in my fingers when typing or holding a phone in my hand, lower back pain, extreme fatigue and the feeling, if I've 'done too much', that something is squeezing on my upper back and chest. I take Gabapentin which helps.
GBS
I had GBS in 2012 was hospitalized for 7 days got 5 plasma treatments then when to rehab. I still have lots of trouble with my feet and toes they hurt all the time my toes still feel numb I have to sleep with socks on because it feels like the inside of my feet are frozen. I have a lot of back pain stumble a lot while walking and NEVER get a good night's sleep I can't help but wonder if a person makes a full recovery. Does anyone else have any of these symptoms after GBS
GBS
I developed GBS in April 2015 after an Appendix burst. I also sleep with socks on and still have trouble walking. I have been able to walk over a mile recently without the cane but it's an adventure to say the least. I feel I have been somewhat blessed as I've heard of worse situations. When walking do you feel normal or do you walk like me slow and unsteady. It's been quite depressing for me as I had a history of great health and running competitively at a high level. Will I ever be able to run again or will I always have difficulty just walking? Thank you so much and pray for the best for you.
GBS - Steve
Steve, you don't say how old you are. I am old and have not improved much in six years. I am stronger when I do exercises, and weaker when I sit around. At the moment I am going to physio/rehab and I can see a difference in strength and flexibiity. I think the surest way to depression is to try to do evrything you did before, and to speed through your former activities. It would seem that the best and happiest thing to do is to accept that you have some problems, work your way around them, or tackle them slowly and deliberately, and give up notions of a quick fix. There isn't going to be one, although some folks do improve. I find that the fatigue from overdoing it, is much worse than the fatigue of the disease, at rest, as it were. Learn to pace yourself, and improve if you can. Walk a bit and then rest a bit. My balance is exactly the same as it was six years ago. Quite poor. What you want to avoid is de-conditioning from doing nothing. The advice for these residuals seems to be much the same as that for ME and MS. Pace yourself!
RE: Walking
Steve, I can only speak to my experience, but I do believe there is strong hope for you to walk and even run again. It has taken me 5 years but I am finally seeing my body act more like I might expect. I did benefit from a knowledgeable doctor who after a program of acupuncture relieved the pains and tingling related with my general weakness and discomfort.
I went for a long time in a wheelchair, to a walker, to a cane and eventually walked again. I was never a runner, so I am not sure if it's something I could do now or not. At first I was very slow and unsteady, I had someone with me at all times for many months to help me in and out of my chair or even go to the bathroom. And the depression was horrible, at times I wondered if I could make it through, but I took anti-depressants to help with that part of it, this way I could focus on getting through my day. I saw a doctor once a week to talk about these frustrations as well.
It took a really long time, but the progress was there, I say just hang in there and allow yourself to enjoy what you can while your body recovers.
-Nate
RE: Submitted by Rita (guest) on Tue, 08/26/2014 - 11:41am.
Yes I still suffer from these same effects, and it has been years since my GBS diagnosis. I was hospitalized and incapacitated for a few months, and it took me six months to be able to get up and around without aid. My arms and hands,more pronounced on my right side continue to hurt with stabbing pains. The lasting paresthesia is constant and maddening. I keep hoping I will get used to the never ending "pins and needles" feeling but it is just as annoying as day 1. Sleeping is horrible since it seems to intensify, or the lack of distraction of the day allow my brain to focus on it more. The pain and tingling has kept me from any normal sleep I may have had before GBS. I think my mood and general temperament is strongly effected by this as well as the constant torture of never ending "dead hand" "pins and needles" feeling. Holding objects and even typing is difficult. I am in a constant search of something that may help the neuropathy and paresthesia. I do not like the side effects from Gabapentin and I am in search of an alternative. Despite all this I still have laughs and can enjoy a nice day, but the maddening feelings and depression from the experience and ongoing complications is always waiting for me. Overall I try and stay positive.
Rita have you found any relief since your posting?
GBS
Rita, my daughter in law's father has just been diagnosed with this terrible affliction. His daughter is gluten/dairy intolerant and it makes me wonder if there is a connection. Have you had a chance to consider this? My understanding is that in some people the gluten/dairy causes inflammation and pulls down the immune system and the nervous system can be a target in some people.
All the best, Sal
gbs
Hi, i have gbs got it with a double wammie, was walking my dog when my left side weakness caused me fall and i fractured my skull when i hit the ground.. moving on though to your question i have recoverd from both, however i still require pain patchs and it was november 2013 when diagnosed. I just dont seem to be able to get completly recovered, pain is not to bad, except that the lower back and lower legs pain is always there at night. I have since my gettiny gbs do not sleep well. Maybe this is what is left for me i take panadol osteo during the day and have to take 1 endone tab at bed time.. i do hope you improve all the best . Regards:jeff d
Gbs
When I said full recovery I meant there are some days that are like I never had gbs,but then some days I still have that electricity feeling in my feet exspecially if I hadn't had enough sleep. Sometimes my legs ache at night knee down or muscle spasms.i went through a time when I was scared and every little tingling I went to emergency room because I thought it was coming back,it hasn't yet.its been 9 years and yes there's still little things but I'm just glad I recovered as much as I did.
GBS patients do not recover fully please correct this informatio
You need to stop saying that " most people recovery fully form Guillian-Barre Syndrome. It is the only that the extreme paralysis of the disease in it's nadir makes it seem like people recover completely. 90% of GBS patients still have significant residual symptoms many years later. It is demoralizing to people with GBS to read that people recover completely when this is really not the case. I have GBS and I have met many others with GBS, none of us have recovered completely or even significantly. The residual symptom sometimes referred to as 'nuisance symptoms' by medical professionals, would have most people running to there doctor if they were to experience them on there own. It is only the contrast between the life threatening quality of the disease that make them seem insignificant. GBS patients still suffer from significant ongoing symptoms. It would be helpful if you published more accurate information.
thank you
C, Gomez
AGREED to the fact GBS patients do not fully recover
My father has had GBS for 25 years. I watched him become completely paralyzed for a year, and then slowly start being able to walk again. He has walked for 23 years. For these past 2 years, he has become completely immobile. I have watched him deteriorate right before my eyes. Although I do not have GBS, I can only imagine how physically painful it is to basically have your body fail to work properly anymore. Living with the disease, and seeing how every case is different, my heart goes out to everyone that 'recovers' from GBS. I would have loved to see these so called 'recovery cases' or even those who have no symptoms after 2/3 years, because watching my dad for 25 years live in constant pain, and have no strength to get up in the morning, even for his kids, was the most heart wrenching thing. And even though doctors do not know what causes GBS, my father contracted the disease 3 days after receiving a flu shot. Is this to blame? Who knows. But I have sworn off flu shots my whole life, and so will my children. God bless everyone with this disease, and especially the families.
vaccine related gbs
i also got gbs from a flu shot in 2013. i am still in recovery and have so many other little problems that it seems unending.
It certainly is difficult.
It certainly is difficult. It's been 5 years and still have issues. But I did find a neurologist who uses accupuncture. She is very familiar with gbs and has successfully been able to lessen the ongoing effects. Hopefully you may be so lucky to try and locate similar help. It has been a real life changer for me and dealing with the ongoing issues.
No Full Recovery
I agree with Gomez, and feel that we GBSers get a raw deal. I had to really search to find out about "residuals", damage in any other language. GBS and CIDP wreck your life and when it involves small children or young adults, much more attention is needed. I am actually losing faith in doctors to know what they are doing. They don't seem to understand this at all.
My infant had this
My son was just 5 months old and got his first ear infection. A few days later he began choking on his bottles and wasn't using his legs as much. His face was beginning to droop and he eventually wasn't using his arms. I would try to stand him up and he couldn't support his weight. They thought it was botulism and now at leaning toward GBS. He was on a feeding tube for 2.5 months and now we have to thicken his bottles. We go to speech therapy to help with his eating solids. PM comes into our home to help with his motor skills. We have a long road ahead as he is now 8 months and just barely able to sit unsupported. I do feel lucky because he was never in ICU we did have multiple hospital stays but just so they could keep an eye on him. So I guess my question is how concerned do I need to be about a relapse? He has just spiked a fever tonight and I didn't think I was going to be paranoid but I am.
how is ur son now
same problem with my son , if ur son is all right please sugest us also my son 10 months old
Re GBS
Hi Chelsy
I have just stumbled onto this website and I am so saddened to read of your little baby. I have two adult friends who have succumbed to this terrible syndrome. Because of a history of food intolerances in their families, I am wondering if there could be a link between gluten/dairy intolerance and GBS. Gluten/dairy can weaken the immune system and that allows inflammation to occur. In some people it is the nervous system (or parts of it) that are affected. Just a thought. If you can afford it maybe consult with a wholistic doctor but ask around for a good one who really does deal with intolerances and can order the correct tests.
Hope this helps, Sal
Guillain Barre; Me too.
I had GBS 5 years ago, after a gastro intestinal attack which I think I caught while visiting a friend in a nursing home, with practically no symptoms at first. I just felt flu-ish and tired. Back ached. I went to the doctor and she referred me to the Neurology clinic, a referral that got lost. I live in Scotland and use the NHS. As I was getting better, I didn't follow up and try to get another Neurology appointment. That was in July. I had numb feet and no reflexes, balance was poor. Then in December of that year, the doctor insisted that I have a flu shot. Within a week I could not walk and was seeing double, had some face and throat involvement. It was just an ordinary flu shot, not swine fever. Finally in February, I saw the neurologist who said it was GBS, but "resolving." By then, I was walking with a cane and had a bad hip flexion. For 18 months, it continued to get marginally better, and so, when I thought I could stand up properly, I went for my breast cancer check, and guess what? I had that, so had the surgery and the radiotherapy. No chemo. Since then, I have been increasingly tired, back won't hold me up, I use a walker outside of the house, and can just walk to the back of my garden with a cane, and through the house without one. I have all the usual twitches, fasiculations, endless fatigue, sleepiness and miseries. My life has simply stopped. I don't drive because I cannot walk when I get there. The only bright spot is that my eyes slowly got better and after two years, I could read a Kindle. I am lonely and depressed, and tired. Legs are strong, but hips so weak that I can hardly walk. I was 69 when this hit. I was a strong, sturdy person until this. I have quit trying to play the piano, although fingers work. But, I am very slow with everything. I see from the above that we are all about the same. Depending upon the amount of damage, we get somewhat better, but the idea of a complete recovery has certainly never entered my head since the first year. I have found that I have trouble focussing on small things. I cannot read Greek now, as it requires close scrutiny. I don't even knit and sew much now. My eyes say no. I have hired a gardener and a housekeeper. So, all you brave people, Blessings and keep trying. My husband is my principal carer, fetching and carrying, not what he expected to be doing at age 77! We keep the house full of food and whenever the nine grandchildren come, their parents do the cooking! It is the best we can do. The key to happiness seems to be to keep doing what you are capable of doing and not dwelling on all those other things you cannot do. Take lots of naps. I do feel for those of working age. It must be very hard. My prayers are with you, most of all.
GULLAIN BARRE SYNDROME - FROM A GLASWEGIAN VIEWPOINT
Sorry to say I can relate to what some GBS sufferers are going through - I am a 56 year old man who nearly 7 years ago was stricken down with this horrible illness.I too on a quiet Sunday felt a little "dizzy" and my balance and coordination was not as normal.When i got back home i felt tingling in my feet and hands and i had trouble swallowing - I knew something was seriously wrong(especialy when my wife said "your face is Grey") that aside after looking in the mirror I had to agree with her.
Initially the 1st Doctor I saw was unsure and i had to stay in hospital overnight - the following morning when I awoke both my arms and legs were very weak - A 2nd Doctor came in,examined me and said I may have GBS.After I had electrical charges through my hands and feet a 3rd Doctor confirmed my GBS.
Nothing could prepare me for what was about to happen - I felt Paralysed as I could only blink and heard a Nurse say "If his breathing does not improve we will have to put him on a ventilator.(MY BREATHING DID IMPROVE)
For the months ahead i endured countless blood tests , a tube stuck up my nose and down into my stomach in order to recieve vital nutriants , a full blood transfusion - and - luckily ( ??? ) I managed to pull through , go from a zimmer to crutches and eventually able to walk again.
To this day I still have difficulty with loss of balance , loss of sensation , and get so tired sometimes that I need 2 to 3 hours sleep in the middle of the day.
Needless to say I do not "look" as though I have anything wrong with me except on the few occassions where I stumble or fall to the side.
Ask me if I am happy - I am happy as a pig in s**t - - - - Having endured this horendous illness - I have made it through many worrying and stressful days.
I HOPE THIS HAS BEEN HELPFUL TO ANYONE GOING THROUGH THIS JUST NOW - OR - ANYONE ALREADY HAVING SUFFERED GBS.....
Gbs syndrome
Contacted GBS 8years ago. I can't walk. Recently I wAke up at night in severe pain. I have found no cure for the severe pain. Any input would be much appreciated.Thank You
Pain of George Emerson
George, No one has answered your query. I am not an expert, but if you can take the non-steroidals like Arcoxia or Naproxin they are some help. Some anti-epileptic drugs are used for severe pain like Lyrica/Pregabalin, or Gabapentin and are useful. All have side effects, however, and some are more trouble than they are worth. Even Tylenol/Paracetemol can be moderately helpful. Most of all, go to the doctor and ask specifically for pain relief.
I acquired gbs 7years go on
I acquired gbs 7years go on my 81st Bd It hit me pretty hard. Lately I awaken early hours at night with terrible pain all over body. Any advice surely appreciated. Thank you
My sister has GBS
Recently my 17 year old sister was diagnosed with Gbs. I have not gone and seen her in the hospital i cant see her in the state she is in, she is currently in Icu i just want to ask for prayers and advice. My heart and prayers go out to my sister and everyone who has had Gbs or knows someone who has it.
Sister
Hi Serendip,
I just got out of the hospital after a 3 week stay with GBS. I was fortunate to not go in a ventilator but I am still struggling to walk and my arms/hands tire out quickly. I was scared to death through all of it, especially while in icu.i would strongly advise you to visit your sister. She is probably also very scared. Seeing a familiar face and knowing you are ther to support her emotionally is a big help. It's terrifying going through this as a patient. Put your own fears aside and give her the strength she needs to get through this.
GBS
Please read the vaccine inserts. GBS is listed as an adverse reaction. Prayers to your sister.
GBS and pregnant
Nine years ago I got GBS,I was 26,healthy and 7 months pregnant with my fifth child. I got it after a stomache virus. The onset was slow,when I talked about the tingling and numbness was told it was probably the baby sitting on a nerve. About 4 days into it I woke up one morning and nothing below my waste worked. I was hospitalized many times my arms and legs were numb,I was blind for 2 weeks,my throat was paralyzed,everything I ate I threw up everything I drank came out my nose,paralyzed on one side of my face it affected my breathing but not bad enough to be ventilated,I lost 6 pounds during my pregnancy,I though I was going to die,4 weeks after immunoglobulin I started getting better,delivered my son by c section they could not put me out due to the gbs and my breathing,my son was 6 pnds 6 ounces and healthy,for a long time if I didn't get adequate sleep I'd feel burst of electricity in my feet but that has also stopped this past year. I feel very blessed that I had a full recovery a healthy birth and excellent doctors and am praying for everyone who has gone through this. I feel like after having this we are put in a category,I feel like doctors are scared to treat me even though I'm ok,I had GBS.
GBS survivor
In june 2012 I noticed back pain and numbness in feet/ hands that rapidly spread. In a couple of days could not walk. I was thinking pinched nerve. Tried a walker... fell... could not get up, panicked wife called ambulance. Ended up in Vanderbilt for 3 weeks. Smart wife, good medical treatment and diagnosis saved me. However my insurance would not cover pt pay, they would pay for a nursing home. My mind set was that you go to nursing home to die. So refused and I went home in a wheel chair, rehab myself with help of loving wife. In about a week the wheel chair was gone went to walker then a cane, now nothing. I still have tingling in toes, tired really easy, legs weaker than I like, which affects my balance.
Are these post GBS symptoms similar to any one else??
Prayers to all who have suffered and continue to suffer.
GBS
As far I know, tingling, fatigue and weakness are all signs of post GBS. If you are tired, you need to rest and eat well and take care of you! There is no time table on recovery. I am 19 months out and I still have numbness in my face, which is the worst part. I also have tingling, "zaps" here and there and muscle spasms. I consider myself blessed from what I have read and seen. Take care and say positive - you are alive and able to enjoy life!!
gbs
afer 3 days treatment of hemmoglobeline I walked my first 8 steps. I walk very slowly. But now after a month my legs are getting parelysed again. Can some one tel me if this is normal? i'm a fitter and turner and I have to do my work.
after effects of GBS
I was diagnosed with GBS New year 2006. My recovery rate was excellent and I was left lethargy and the usual pain. However last year the pain and cramps started to get ever worse and I am left with severe cramping in my hands ,feets and abdomen which is extremely uncomfortable and the all round muscle weakness doesnt help either.
Are we ever 100% cured of this dreaded GBS?
My uncle has GBS and is not expected to live :(
My uncle has been in this hospital for over a week, on a respirator, high pain medication due to the severe pain, low blood pressure. Additionally he is septic now. My mother does not expect him to make it. He is in so much pain & is unresponsive. I ask anyone who may read this to pray pray pray for those who are affected with this disease and the families of those whom are affected.
Of course this was my favorite uncle and this is so so tough.
GBS
Hello how is your uncle? My mother is in ICU today with GBS. She's on a respirator and is receiving Plasmaphersis treatment. She's 86 years old. This is such a rare syndrome. Will she ever get better. She's taking so much medication for pain. She was a pretty active lady. What is the length of recovery? If you can tell me anything, I'd appreciate good news. Thanks
GBS
Hi
I can only give you my experience with
GBS.
I was 81 years when I acquired gbs. I was
Not on a ventilator, but was given the plasma
Treatments
I didn't recover. Been 9 years now. I'm in a
Power chair for mobility. Can't walk, but do
Many things via the power chair. I do the
Toilet business, and do my own showers.
A mental adjustment must be made. Keep me
Posted.
George
Diagnosed GBS March 2012
GBS doesn't always have to start in your feet. I found out the hard way when I presented in the ER on 3 different occasions. My initial complaint was SEVERE back pain. This was followed by tingling and numbness in my hands then my feet followed by my face “dropping on the right side”. It took 8 days for a diagnosis of GBS. IVIG in the ICU was started immediately and 5 days later I began to feel slightly better. It took 1 month in the hospital, a week in rehab and months of physical therapy to be able to function. After 6 months, I still have numbness in my face, feet and hands. Yesterday, my back started to hurt again. I am petrified that this could be a recurrence as this is the way it originally started. I am told that there could be residual effects and this could be one of them. Maybe I tried to return to my "normal" life too soon? There is just no new medical research that I know of to support or dismiss complaints such as this. GBS is not only a physical disease but emotional as well. Prayers go out for all those who suffer from it.
GBS
My heart goes out to all those that lost someone from GBS or suffer from this syndrome. I had a near death experience after I received the influenza vaccine in 1976 when I was in the military. It was a day or two that I knew something was wrong and something was going to happen to me. A few weeks pasted or so I was sitting down reading a book. My focus went back to center of my chest, where I felt this tingling feeling. With in seconds it spread across my chest arms and legs and knew I was going to die. My life flashed before my eyes and that was not the last thing I saw. The last thing I saw was my body on the ground and me floating over it and then my focus was the men around me saying 'call the medics he might be having a heart attack.
In my case GBS was not diagnosed by my doctor's then and it was treated as heart burn. The viral infection then manifested itself in my organs for over twenty-years. This article is very helpful in understanding what I have. I knew from the very beginning that my condition was the result of this vaccine.
In my case, I felt that the 'electrical system' in my body was affected. It has now moved to my lower back which caused me to be crippled and in which it also affected my legs and hands. I am recovering now with only numbness and pinching nerves. I am one that will suffer from this the rest of my life. Like most people that had a N.D.E., we are not afraid to die anymore, because we know of the love on the other side.