What in the world is Guillain-Barre syndrome?

Trust me - I had never heard of it either until I contracted it (which is not exactly the right term) four years ago come this April 6th. It' s French, after the two guys who identified it, and it's pronounced "Gee" (G as in goose, long e) "Yon" "Bah" "Ray" syndrome. Chances are very good that your family physician or ER doc have only heard about it, have never diagnosed it, and are not on the lookout for it. That lack of familiarity can kill you. Even if it does only afflict 1 to 1.5 of every 100,000 Americans, knowing the symptoms may save your life or lesson the amount of nerve damage done before you are correctly diagnosed and treated. So that you and your family will be forewarned,and forearmed, here is an excerpt from a college paper I did (a "psychological autobiography" for a developmental psych class) which should give you the needed awarness. It should at least give you enoufgh interest to Google Guillain-barre syndrome for an even better understanding. It was early April, 2004. I was a healthy, fifty-six-year-old bachelor with a job I loved and, generally speaking, happy as a clam. That was about to change – the healthy part, anyway. I was on a ten-day business trip that took me from my home in St. Marys, Georgia, northward, through the Carolinas and the Virginias. By the late afternoon of April sixth, about the fifth day of the trip, I pulled in to a Hampton Inn, as usual, in Charleston, West Virginia. I had not felt quite myself as I traveled west across I-64 from Richmond earlier that day. I went to bed early that night with a feeling that I was on the verge of coming down with something. Around 1:00 AM, I woke up in a profuse, diaphoretic sweat with a high fever, chills, and diarrhea. I realized right away that those symptoms were indicative of a pretty strong dose of something quite virulent. Being a veteran of the road, I immediately suspected bad food somewhere along the way. Being a former Navy Chief Hospital Corpsman, I was not easily spooked by such an occurrence. Moreover, I always traveled with an aid kit chock full of over-the-counter palliatives. I immediately started dosing with acetaminophen for the fever and loperimide for the diarrhea and intestinal cramping. I figured that at worst, I would have to call and beg-off of my appointments in the morning, spend a day in bed, then resume my trip the next day, albeit probably feeling like Hell. The next morning, after waiting ‘til nine to call and beg-off of my appointments, I walked over to the next-door convenience store for a quart of Gatorade. On the walk of a hundred yards or so, I had this really odd sensation that my legs were not moving quite as quickly as they should. It was as if there was this almost imperceptible added delay of nano-seconds between when my brain was signaling my leg muscles and when they were responding. Moreover, I felt terribly fatigued and had no appetite whatsoever. By that night, I felt no better. The next morning, realizing that it was most assuredly not going to turn out to be just another 24-to-48 hour intestinal bug, I cancelled all of my remaining appointments and headed for home. That turned out to be a long and miserable trip of about twelve hours longer than usual, with many more than the usual rest stops. When I finally got home, my boss agreed that I should lay-off until I was recovered. Around the 13th, still feeling poorly, I went to a local “doc-in-the-box.” He told me that it was no doubt a severe case of a food-borne illness, as I had suspected, and that I should just continue to rest and treat it symptomatically for a few more days. On the night of the 15th, I went to bed early. I had been feeling more fatigued than ever that day, but, at least my appetite had returned with a vengeance. About 1:30 AM on the 16th, I woke up to got to the bathroom. I stood up from the bed with no problem, but when I went to step off towards the bathroom, I came down with all of my weight on the top of my left foot, rather than the sole. I went down like I had been shot through the head. My left leg rolled up under me and I heard a sickening, loud snap as all of the lateral ligaments of my left ankle parted. After crawling into the bathroom, I decided that this quite interesting development definitely called for an investigatory trip to the ER. My first game plan was to get dressed and drive myself. After crawling into the living room, dragging my clothes in my teeth, I was able to pull myself to my feet by climbing up the arm of my sofa. After the second time I did that, only to fall backwards, hard and uncontrollably, as if someone had taken a baseball bat to the back of my knees, I called 911. I finally got to the Camden ER around 3:00 AM. Through the wee hours of the morning the staff ER physician ran an extensive battery of tests, including a CAT scan of my head. Around noon, a different doctor stuck his head into my cubbyhole and said with a smile that the good news was that all of my tests had turned up negative (i.e., “within normal limits”) and that I could go on home. I informed him that while I was glad to hear the test results, I remained somewhat concerned about my inability to even stand up, much less walk. Moreover, during the night, I had begun to loose strength in my arms and hands. Nonetheless, he insisted there was nothing clinically wrong with me and that I should get up and go home. When I attempted but failed to get up off of the ER gurney, they called in the fire department (I weighed 310 at the time). It took three firemen to lift me into a wheelchair. At this point, I was flabbergasted. I wondered whether I was in The Twilight Zone or if, perhaps, a crew from Candid Camera was in the hospital. When I asked if they would mind if I just sat out in the waiting room for a while to see if I might spontaneously recover, they graciously said that I could. Every thirty minutes, or so, they would peek out to see if I was still there. After some three hours of that, they apparently began to wonder if perhaps there really was something wrong with me, after all. They then had a couple of physical therapists take me over to their clinic. After several attempts at lifting me to my feet and assisting me in futile attempts to walk, they apparently were convinced. I was finally admitted to the hospital as an inpatient around 3:00 PM, a full twelve hours after my arrival. I had no sooner arrived in my room before yet another doctor arrived and introduced himself. From the nature of his questions and his practiced millifluent tone, I deduced immediately that he was a shrink. I humored him - toyed with him, actually – for a few minutes before I finally informed him that I knew he was a shrink, that I was quite sane, and that it was not a psychosomatic illness, but, most likely, a neurological crisis. He concurred, wished me well, and departed. He no sooner left than in came a neurologist, Dr. Silliman, a practicing neurologist and University of Florida Med School professor. As luck would have it, they had caught him at the St. Marys satellite clinic of Shands / University of Florida Medical Center just as he was about to depart for Jacksonville. In another stroke of luck, that was the only day of the week that there was a neurologist anywhere in the county. After hearing, from my mouth, the history of my illness, he told the ER doc that he felt quite certain that he knew what it was and that it was imperative that I immediately be rushed by ambulance to the neurological intensive care unit of Shands/UF, Jacksonville. It was getting more interesting with every passing hour. When I arrived at Shands, the three things that Dr. Silliman wanted most urgently were an MRI of my head and neck, a stool sample for C&S (culture and sensitivity), and a spinal tap. The next day, he informed me that he suspected that I had a classic case of Guillain-Barre syndrome, but that he needed to await some test results, to be sure. Test results later ruled out a brain tumor and confirmed Guillain-Barre. It seems that I had contracted a bad case of an intestinal bacterium known as Campylobacter jejuni. A typical means of transmission is the ingestion of contaminated and undercooked meat, particularly poultry and pork. While it is a particularly nasty bug, the overwhelming majority of victims recover fully. However, about 1-in-100,000 patients go on to develop Guillain-Barre syndrome, a rare, auto-immune disorder. Although GBS is not yet fully understood, the current scientific consensus is that most likely, the outer shells of certain strains of the bacterium bear a close, microscopic, morphological resemblance to the outer covering of the myelin sheath of the victim’s PNS. In a case of mistaken identity, the protective macrophages of the victim’s immune system not only go after the Campylobacter jejuni bacteria, but the nerves as well. Thankfully, CNS cells are not affected. There are two categories of Guillain-Barre syndrome: demyelinating and axonal. The former, as the name implies, involves damage to the myelin sheath only. Between 90% and 95% of those patients recover fully, and usually within 6 to 18 months. The latter is much more severe. In the axonal form, the macrophages not only “eat through” the myelin, but also do permanent, irreversible damage to the underlying axons. Maximal recovery (of the damaged myelin) in the axonal form can take up to 24 months. As a former girlfriend once said, “Jay, if you had a pet duck it would drown.” Naturally, I have the axonal form. I remained in the neurological ICU for 14 days. They infused me with massive doses of human immunoglobulin ($36,000 worth), the standard treatment. Total bill for 14 days - $88,880.00! That was to be a drop-in-the-bucket compared to the two-point-five million I guestimate this will cost eventually. After the human immunoglobulin had suppressed and stopped the attack on my nerves, I was transferred to about the cheapest, most Gawd-awful nursing home in Jacksonville, Lanier Manor. That was the on-the-cheap decision of my regular group health insurance carrier. I more or less vegetated there for two months while I continued to try to convince my employer’s Workers’ Comp carrier that my predicament was covered by Workers’ Comp law. In the meantime, I was being covered by my regular health insurance at work. I couldn’t lift my heels up off of the sheets. I could not button a button or squeeze toothpaste from a tube. I could only just barely turn over in bed. I received laughably inadequate and infrequent attempts at physical therapy in what was no more than a hellish, foul-smelling, convalescent center. Finally, around the first of July, I prevailed in the Workers’ Comp dispute, thanks in no small part to knowledge gained during my twenty years in the insurance business. Within 48 hours of the news, I was transferred to Brooks Rehab in Jacksonville, the absolute premier rehab hospital in this part of the country. I was treated wonderfully at Brooks until my discharge on January 7th of 2005. Apparently, after reviewing my case, the director of the physical therapists made a wise decision to assign me to a woman who was generally acknowledged as their best PT. Her name was Rhonda Felice. Rhonda was a forty-ish woman from Trinidad. Raven haired, with gingerbread skin, raisin-dark eyes, and a smile that lit up the gym, Rhonda was technically superb and humanly wonderful. In six months, exercising three hours per day, she took me from infantile helplessness to largely regained upper body strength and the ability to use a walker sparingly and get around fairly well in a wheelchair. I will be eternally grateful to her and always consider her a friend. I have another half-dozen friends on staff at Brooks, as well. Since I came home in January of 2005, my Workers’ Comp company has provided me with Certified Nursing Assistants (CNA’s) for four hours per day, seven days per week. They do the housework that would be exceedingly difficult, if not impossible, for me to do. Additionally, they took me to physical therapy in St. Marys thrice weekly through the second anniversary of my illness, when my neurologist decided that I had reached my “maximal medical improvement.” They take me grocery shopping weekly and, since August, to college classes at night. Even though the overwhelming probability is that I will never walk again, my current situation is not so bad. I’ll turn 59 on the 29th of this month. Other than my obvious neurological problems, my general health is otherwise pretty good and my spirits are fine. I should note that the insurance company tells my lawyer that sans the GBS, I should have expected to live another 22-years, vice the 13.5 they project now. I plan to prove them wrong. I’m on Social Security and Medicare. Moreover, I’ll continue to receive my weekly indemnity checks from Workers’ Comp until a few months after I turn 64. At some point, I’ll receive a few hundred thousand dollars in a lump sum for future medically related expenses[that never happened - offer way too low.] That will happen after I prevail in my argument that they should foot the bills for a power wheelchair and a wheelchair van that I can drive [I now have both]. The fact is that I could sit on my butt and do nothing for the remainder of my life, from a financial perspective, not to mention that I have a legitimate and almost certainly permanent “45% whole body” disability rating. However, I find that prospect quite unappealing – even daunting. My pre-GBS game plan had always been to die with my boots on, actively engaged in some remunerated endeavor or other [I am now well on my way to a second degree and another career within the parameters of my disability.] I hope you will never have need of this knowledge, but far better you should have it than not. Update, 03/08/08. Can't you just feel the Christian love vitually oozing out of this Thuggie? MrTact_is_an_idi ot Kingsland, GA Reply » Report Abuse #34 1 hr ago His illness??? that's not an illness that is Karma. Mr Tact is, was and always will be a gigantic piece of human excrement. How's that verse go...Whatsoever a man soweth, that shall he also reap. If you're a jerk and treat others like crap (including those who are handicapped) like Mr Tact does. well then you'll get the "fatty fatty can't wait for his food to be cooked" Karma. I will agree that food poisoning is a bad thing and you have to be careful when you eat at restaurants but there are just some foods you should know not to eat in a mom and pop restaurant in some strange town. Pork is one of the primary foods not to mess with. I have no sympathy for Mr Tact and his "illness" Karma is a Witch!