Guillain Barre Syndrome

Question: Has anyone had Guillain-barre syndrome? How long was it before you could walk again? My daughter has been critically ill - struck down with Guillain-barre syndrome on 20th October. She was totally paralysed, only able to blink, and on a ventilator until today. She still is being fed through an NG tube and cannot move her legs at all but has some movement in her arms. Thank god she can talk to us at last! I was just wondering how long it took others with the syndrome to be able to walk unaided again. My daughter is 20 by the way.

Answer: Guillain-Barré (Ghee-yaw Bah-ray) Syndrome, also called acute inflammatory demyelinating polyneuropathy and Landry's ascending paralysis, is a disorder of the peripheral nerves, those outside the brain and spinal cord (peripheral nerves and spinal roots are the major sites of demyelination in GBS patients). It is typically characterized by the rapid onset of muscle weakness and often, paralysis of the legs, arms and breathing muscles. The cause of Guillain-Barre' syndrome is not known; and why the disorder only occurs in certain patients is still not known. Research to date indicates that the nerves of the GBS patient are attacked by the body's own defense system against disease-antibodies and white blood cells. As a result of this autoimmune attack, the nerve insulation (myelin) and sometimes even the covered conducting part of the nerve (axon) is damaged. it took me about 2 years.

Question: Guillain Barre Syndrome again or what is going on? I had guillain barre syndrome in 2004. I am extremely fatigued and having back pain....I can't tell if my feet are tingling or numb because they still do that from my previous GBS. Could this be GBS again or after you have GBS do you still get extremely fatigued even years down the road? Just concerned. Thank you, Tiffany

Answer: My son 12 is acctually getting over guillain barre right now and the dr told me that even years down the road he may feel really fatigued. After getting guillain barre you can relapse in a 3% chance. My son spent 59 days in the hospital and was on a ventolater for 8 days of that. They said he may never be 100%. He just learned how to walk again about 1 month ago. He is really scared he wont skateboard again. It is a scary thing to go thru my prayers are with you. Please email me and let me know what you have found out. I may have this same question in a few years. Nate_angie@hotmail.com put GBS in the subject so I know it is you Here is what I just found and below I will post a couple web sites. the second is where I got this info. 10-20% of the patients are still somewhat weak 3 years later, while 5-10% have severe permanent motor problems and may require a wheelchair to get around. Although the majority of patients recover fully, most of them suffer from mild forms of weakness and/or sensory disturbances. They may experience periodic bouts of tingling and numbness in their fingers and toes, and days where their hands "don't work right" and they drop things. Very few patients require wheelchairs, and few have such severe problems that they cannot resume their jobs, unless they are physically very demanding. These residual symptoms and their impact on the lives of post-GBS patients is not very well researched or documented, and many doctors may be at a loss to treat them. This website is working to create a collection of resources based on real-life experiences. Patients who suffer or have overcome residual symptoms are encouraged to share them here: See "Focus on Post-GBS residuals" . 'Pain: A part of life in the future' below deals with the issue of post-GBS pain. 'Case histories' and 'Focus on Post-GBS residuals' contain valuable tips on how to tackle residual symptoms and experiences of continuing recovery many years after the initial attack. Patients are urged to be mindful of the fact that because they have GBS, they are not immune to getting another illness simultaneously. If you experience new symptoms, or an unexpected worsening of the symptoms you have already, they may have a connection to the GBS or they may not. So please report them to both your doctor and your neurologist.

Question: can guillain barre syndrome take along time to reach its worse point? My grandfather has the Syndrome and has been in the hospital for the past five weeks and was numb in hands and feet for two weeks before that. He went on the resporater two days ago. Doctors are begining to question there diagnosis? I just want to haer from anyone who has dealt with this first hand.

Answer: Treatment for this disease is usually supportive., and sometimes steroids are used. Recovery may take months and is usually incomplete.

Question: Recovery rate for patients with Guillain Barre Syndrome? My mother was diagnosed with Guillain Barre Syndrome last week (10/22/06). She had some tingling in her finger tips and toes on Sunday afternoon, and felt weaker as the day went on. By Sunday night my father had to call an ambulance for her and by Monday evening she was completely paralized, in the ICU on a respirator. Two days later (Wednesday 10/24) she had her first plasmapherisis, and had 5 treatments, everyother day, today being the last treatment. Since last week, she has recovered some movement in her arms and legs. She can wiggle her feet, and shrug her shoulders, and can shake her head "yes" and "no". I want to know basically, when we an expect her to be off the respirator? How long does it take to be able to get out of bed? How long until she can walk on her own again? This disease came on so suddenly without warning, and my family is completely distraught over this. Any information would be greatly appreciated. Thank you. I mixed up the dates. My mother was diagnosed on Monday, October 23, 2006. She received her first plasmapherisis on Wednsday, October 25, 2006.

Answer: Hey, first of all you should know that guillain- Barré syndrome has many presentations and different clinical forms, all which have a different prognosis. The fact that your mother had to be put on the respirator in the ICU means she had a severe type of this syndrome. Plasmapheresis is an adequate treatment and she seems to be making progress but still it could be a few more weeks before she doesn't need the respiratory support.You should ask the specific questions you are posting to your mother's doctor as he knows the case, still he might not be able to answer everything you want to know. You have to be patient!! i hope your mom recovers soon!

Question: Have you had an experience or know someone that had with Guillain Barre Syndrome? It's very rare, I had it myself two years ago, thank God I'm fully recovered. Since I had it, I became really interested with the subject, and since it is so rare I'm using this method to know about other cases. Thank you for your attention.

Answer: Hi, I am diagnosed with the Guillain-Barré Syndrome variant CIDP. I am a liaison for the GBS Support Group in the UK and also run two websites and a very active forum for those with the disorder. My CIDP has been fairly consistent since 1976. It seems that the majority of those on the forum have indeed had longer than the 'average' dose of GBS. There are many amazing stories and I never cease to be amazed by how resilient these patients can be!! Below are the URL's for our current forum, the web-site, and our original (now closed) forum. As an ex-sufferer you are more than welcome to join and offer your experiences, and hope, to members. All the best, Kezzi. . .

Question: Does anyone have first hand experience with Guillain Barre Syndrome? Do people usually recover, or does it leave a person paralized?

Answer: If you can catch the disease in it's primary progressive state and treatment is begun in a timely manner the disease will eventually regress to a minimal state. However, I have found that the person will usually have some numbness or residual tingling in the feet or lower legs. It is unfortunate in that this disease is one in which patience so demanded of the person struck with it. You don't say if the person is yourself or a loved one. I can tell you that if it is a loved one be kind and gentle as that person is trapped in their own body and may at times be unable to fully communicate. Think about how frightened they might be. One the brighter side there is newer and better threatments being developed by a Dr. B. Khatri. He is a world reknown neurologist and has been making great strides in his treatment with plasmaphoresis.

Question: What is the difference between Myasthenia Gravis and Guillain Barre Syndrome?

Answer: They are both what is called "Auto-immune Diseases". The body's White blood cells normally produce "Anti-bodies" to fight infection. In these illnesses, the anti-bodies attack the body instead. In Myasthenia Gravis, the anti-bodies attack the junction between the nerve and muscle, causing weakness that gets worse the more that you try and move. It commonly affects the eye muscles, speach and swallowing muscles, and also the muscles in the arms and legs. It is a lifelong condition, but very often it can be very effectively suppressed so that it doesnt cause any problem. Guillain Barre Syndrome often comes on after an infection eg diarrhoea, chest infection etc, and the antibodies attack the covering of nerves called the myelin sheath. This typically causes an ascending weakness which can progress over hours or days. If it gets severe, it can even affect the muscles of breathing. It usually takes between a few weeks to a couple of months to recover. Most people fully recover and are never affected again. Treatment can be given when the weakness starts to help prevent further deterioration, and helps to speed up recovery. If you want any further info, you can email me.

Question: Can depression be linked with the after effects of surviving Guillain Barre syndrome?

Answer: absolutely,especially if you had a moderate to heavy symptoms of GBS ( Guillain-Barre Syndrome). The more moderate to severe symptoms are quite difficult to deal with and, and the symptoms can linger for quite awhile. Not to seem offensive but, the constant twitching of the facial muscles and, the muscles surrounding the eye are visible to others. This is tough to deal with. People stare at you. Unfortunately, current Society places way too much emphasis on " beauty and " having a Model''s" figure. again, I am not trying to seem offensive but, just how difficult it can be to deal with such a disorder. I had a friend that suffered from Guillain-Barre Syndrome and, it was quite difficult for her to even go out in public. Perhaps, in your case, the feelings of depression are a delayed reaction in dealing with this. Quite normal. Perhaps, you should talk to your Doc as to how you are feeling. Have you checked with a local hospital to inquire about support groups in helping you with how you are feeling?? I hope that this helped some and, you will be in my thoughts.

Question: Whats it like to live with Guillain Barre Syndrome? i'm doing this research project for my anatomy class and i have to describe how guillain barre syndrome changes your life and what its like to live with. if anyone who's had it or knows someone who's had it could give me some ideas or describe what its like, that would be greatly appreciated :]

Answer: 9 years ago, I was a happy Mom of 4 with a baby about one yr old. I was very active tending to farm animals and homeschooling. Within 24 hrs I was unable to move my arms or legs, and spend 10 days in ICU, getting Plasma Pharasis, then One month in the hospital rehab. center learning to walk again. It left nerve damage in some areas, but other wise I recovered well enough. Now 9 yrs later I have relapsed with this the chronic form called CIDP, and I understand there is no cure and I will deal with this forever. I now have a permenant port inplanted in my chest to have long term IVIG treatments done at home. I came home from the hospital this time on a walker, and they are bringing a power wheelchair next week. How does this affect your life....It slips in ,, assults you quickly, stripping away your freedom, leaving you with pain, numbness, and frustration for what you are no longer able to do. When I first had GBS, it was so severe I had to ask my brother to blow my nose for me. They all took turns feeding me. Since I was an independent peson, it was very hard for me to have to have everyone do the things I once did for my self. Massive Fatigue was and still is a HUGE problem. I hope this gives you a small insite into my world...

Question: Central Nervous System Demyelination in Guillain Barre Syndrome? (I appreciate that it is thought to be a peripheral condition, but more recent studies identify possible CNS effect). What would be the symptoms of demyelination within the brain itself ? Could it explain frequent loss of temper or memory problems ? Can I please add people, that I am entirely familiar with GBS. My question is around CNS demyelination, and possible psychological effects. Please can I ask you not to post generic GBS information, as my question is quite specific. (Please don't take offence, I appreciate you looking :-) )

Answer: hi i suffered gbs a few years ago, i suffered profound memory problems forgetting my name and the names of loved one, my personal explanation as a sufferer is that everything is so exhausting that the brain suffers and forgets things, more recently i have returned to my doctor with further memory problems, the doctors explanation is that its a stress thing. my body deals with excessive stress by blanking out certain things, this all stems from gbs. as for the temper gbs is an emotionally draining and scary time, i lost my temper daily. i did however survive

Question: Need medical advice on leg pain after having Guillain-Barre syndrome earlier in the year? Every month during my period i keep getting severe pain in the back of my left leg. Its so bad i can only walk in heels because it is difficult to flex my foot. i've been thinking its just muscle strain, but now im not so sure since it keeps re-occuring at that time of the month. It is not warm to the touch. i also had guillain barre syndrome in september of this year, if that makes a difference.

Answer: GBS tho rare does cause peripheral neuropathy,a nerve disorder..Some take several years to recover others always have residual effects :-( Since your GBS was so recent,if the cramping gets worse suggest you see your Dr.. Best wishes

Question: GUILLAIN BARRE SYNDROME AND BELLS PALSY IS THERE A CONNECTION? I HAD BELLS PALSY WHILE I WAS PREGNANT, THEN 10 DAYS AFTER MY DAUGHTER WAS BORN I WAS HIT WITH GUL LAIN BARRE. HAD ANYONE ELSE WENT THROUGH THIS?

Answer: Both conditions are generally regarded as autoimmune disorders.

Question: anyone have experience or extended knowledge about Guillain-Barre Syndrome ? someone in my family has it and i dont know whats going to happen.

Answer: My husband had it several years ago. It invaided all his nerves; unable to care for himself in anyway. He was in the hospital several weeks and the treatment they used for him was a total blood cleansing, 3 times. Can't remember the name of the proceedure but they hooked IV's to both arms and one removed his blood, ran it through a cleansing machine and back into his body through the other IV. After that, he slowly regained his ability to feed himself, and eventually could walk again after therapy. That has been 13 years ago and has had no problem, in that way, since. If you have any more questions, please feel free to ask me. Good luck and be patient.

Question: Are there side effects or downsides of doing Plasmapheresis for Guillain Barre Syndrome? My friend has GBS, and the doctors are asking if he wants Plasmapheresis to accelerate his recovery. So far he has been doing the iv treatment. The drs also said he may need to take steriods if he gets worse but i read that they dont help at all. Please let me know the pros and cons of Plasmapheresis. Thank you!

Answer: http://www.mgawpa.org/pages/plasmapheres… With prompt treatment of plasmapheresis followed by immunoglobulins and supportive care, the majority of patients will regain full functional capacity. However, death may occur if severe pulmonary complications and dysautonomia are present. http://en.wikipedia.org/wiki/Guillain-Ba…

Question: what is the difference between campylobacteriosis and Guillain-Barre syndrome?

Answer: Campylobacter infections are among the most common bacterial infections in humans. They produce both diarrheal and systemic illnesses. In industrialized regions, enteric infection produces an inflammatory, sometimes bloody, diarrhea or dysentery syndrome. Campylobacter jejuni is usually the most common cause of community-acquired inflammatory enteritis. In developing regions, the diarrhea may be watery. Campylobacter-like organisms can produce an enterocolitis/proctocolitis syndrome in homosexual males. C jejuni may also produce serious bacteremic conditions in individuals with AIDS. Campylobacter fetus is an uncommon cause of bacteremia in hosts who are immunocompromised. Campylobacter lari, which is found in healthy seagulls, has also been reported to produce mild recurrent diarrhea in children. Campylobacter upsaliensis may cause diarrhea or bacteremia, while Campylobacter hyointestinalis causes occasional bacteremia in hosts who are immunocompromised. Campylobacter organisms may also be an important cause of traveler's diarrhea, especially in Thailand and surrounding areas of Southeast Asia. In a study of American military personnel deployed in Thailand, more than half of those developing diarrhea were found to be infected with Campylobacter species. These organisms are related to Helicobacter pylori, which was previously known as Campylobacter pylori. No reservoir other than the human gastric mucosa has been identified for H pylori. Complications: Toxic megacolon Pseudomembranous colitis Colonic hemorrhage Hemolytic uremic syndrome Thrombotic thrombocytopenic purpura Postinfectious polyneuritis/Guillain-Barré syndrome Reactive arthritis Reiter syndrome Bacteremia Endocarditis Cholecystitis Urinary tract infection Pancreatitis Stillbirths, septic abortions (C fetus) Guillain-Barré syndrome may occur as a result of cross-immunoreactivity between human gangliosides GM1 and GD1a and C jejuni lipopolysaccharides. In one study, up to 25% of patients with Guillain-Barré syndrome had stool cultures positive for C jejuni. However, the overall risk is quite small—less than 1 case per 1000 C jejeni infections. Guillain-Barré syndrome (GBS) is described most accurately as a collection of clinical syndromes manifested by an acute inflammatory polyradiculoneuropathy with resultant weakness and reflex changes. With poliomyelitis under control in developed countries, GBS is now the most important cause of acute flaccid paralysis. GBS remains a diagnosis made primarily by clinical history and findings. Though classically thought of as a demyelinating neuropathy with ascending weakness, many clinical variants have been well documented in the medical literature. Acute inflammatory demyelinating polyradiculoneuropathy (AIDP) is the most widely recognized form in Western countries, but the recently described variants of acute motor axonal neuropathy (AMAN) and acute motor-sensory axonal neuropathy (AMSAN) also are well recognized. Many believe that strictly defined subgroups of GBS are not distinguished easily but that the subgroups exist, based on a clinical spectrum of symptoms and findings.

Question: What is Guillain barre syndrome & Parkinson's disease and its cause?

Answer: Guillain-Barré Syndrome - Guillain-Barré syndrome is a nerve disorder. It is an acute and rapidly progressive inflammation of nerves that causes loss of sensation and muscle weakness. This syndrome causes the destruction, removal, or loss of the myelin sheath of a nerve. Myelin is the substance of the cell membrane that coils to form the myelin sheath. The myelin sheath serves as an electrical insulator to nerve fibers. It is also known as a polyneuropathy, which is a disease that involves several nerves. Parkinson's disease (PD) - PD is a progressive disorder of the nervous system. PD is characterized by four main features: rigidity or stiffness of the arms, legs or neck; tremor, usually of the hands; bradykinesia or slowness and reduction of movement; and postural instability (loss of balance). Other symptoms may accompany the main features, including depression, dementia or confusion, postural deformity, speech and swallowing difficulty, drooling, dizziness on standing, impotence, urinary frequency and constipation.