Guillain-Barre Syndrome

Survivors' Stories page #5

Brian's Story     Kate's Story       Amanda's Story     Ron's Story     Jon's Story     Kathleen's Story

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  Brian's Story

My name is Brian and I live in New Hampshire. I'm 58 years old and am currently undergoing treatment for CIDP, which is Chronic Inflammatory Demyelinating polyneuropathy. I have injured myself saying that.

This malady began to manifest itself as a balance problem that would evidence itself when I would close my eyes when shampooing in the shower. I noticed at first that my toes became extremely overactive when my eyes closed, not unlike the wing tips of a bird in flight as an even keel was maintained. Within about a week, it became necessary to touch the shower wall with an elbow or knee in order to feel balanced. I also felt that my legs were starting to get very heavy, and was beginning to feel more knee and hip pain than my years should warrant.

At work, where I deliver pharmaceutical supplies to hospitals and/or pharmacies, my strength was noticeably ebbing. We handle anything from cases of printing paper, which are pretty heavy, to wheelchairs which are awkward, to smaller packages of insignificant size and weight. On the day I decided that I needed to "take a week off" for R&R, I recall in particular trying to lift some ENSURE fortified drink cases. Normally one would grab 5 or so cases of 24 at a time to load, but I could lift only 2 cases and, in fact, my left arm was rapidly collapsing under the weight of the two cases. Prior to this I had been having trouble getting into my cargo van as my legs, and in particular, my knees had started to really hurt with exertion, and in fact, my feet and hands had started to experience numbness. Another oddity was that the ignition key position in my cargo van in the "OFF" position seemed to be suddenly as far clockwise as my wrist could reach. In other words, I was suddenly unable to muster the strength to start my vehicle.

During my "R&R week", I began to really have difficulty getting started. My creaky ole bones had for some time been, well, reluctant to perambulate steadily, if I may. I was having difficulty stepping out of the shower over the seemingly now insurmountable tub walls. My gait was becoming, at best, unwieldy, stairs nearly unmanageable as my legs started to feel lead like.  When trying to dress, it was taking me five or ten minutes to put socks on, about the same to tie my shoes, and the numbness that would soon envelope my hands and feet completely, was making it impossible to find the tab on my fly to zip up, impossible to feel the buttons on my shirt, never mind the slot that the buttons fit in. I actually cut my self using a Gillette safety razor for the first time ever as my steadily declining hand co-ordination allowed the razor to slide sideways. After a week of "R&R", I was really screwed!

The Veterans Administration (VA) has very good medical center nearby and I , fortunately, had the foresight (luck!) to avail myself of it. I dragged myself to the emergency room in late November of 2004. I was treated by a Dr. Lamphere and will always be grateful for the attention and care he provided as he seemed to know something out of the ordinary was happening to me, even as I didn't. He referred me to a neurologist, Dr. xxxxxx, from whom I first heard utter the word "neuropathy". He also uttered the words vitamin B-12 deficiency, which thrilled me as I was convinced that due to the rapidity of the onset of the symptoms I was suffering, that a simple inoculation was going to do the trick and I would be back to work being a productive citizen. I received a B-12 complex shot as well as a supply of B-12 tabs and went home to recover. Naturally, after a week or so, I was still a mess. I borrowed a walker.

My oldest son, who is a military recruiter in a city not far from here, had recently moved in with me as he awaited base housing also nearby. He had left to drive to Iowa to pick up his three young children who were being driven to Iowa from Utah by their mom so that they could spend the holidays with me and my son. Whilst awaiting the arrival of the kids, I continued to deny and deteriorate. Shortly after the kids arrived, and after falling a couple of times, and over my fervent protestations, my three kids, en masse, took me to the emergency room at the VA. What they openly knew, and I secretly knew, was that I needed hospitalization and insisted that I be so designated. It was December 19th 2004. The emergency room doc suggested that we return on Monday the 20th, as he would still be there at 8AM on Monday and would be able to help expedite my getting hospitalized. Again it was Dr.
Lamphere who made the final decision to admit me. He again mentioned neuropathy, and to my chagrin, would not rule out either MS or ALS. Things were getting dicier. It was Sunday, December 19th 2004.

I was moved by ambulance to the VA medical center (VAMC) West Roxbury Massachusetts the morning of Dec 20th. I was on a walker then and by Christmas eve I could not even stand, let alone walk. I had lost all feeling in my hands and feet and, in fact, all extremities had become useless, and hapless was my middle name.

VAMC West Rox, like all hospitals, is kept very warm. Since my bed room at home has only radiant heat from a stove in the room below it, and is thus very cool, I found the hospital bed to be all too toasty. The bed is one of those Hill-Rom tanklike military electric beds with the adjustable head and foot sections. One of the odd symptoms of CIPD is the absolute hyper-sensitivity of the skin of the otherwise totally numb extremities to the touch of foreign surfaces. In other words, the mere touch of the footboard of the bed was akin to an electric shock. Thus the first 10 or so minutes of every night to bed was spent "dolphining" up the sheets to get my toes as far from the footboard as humanely possible. This "scooching up" was due to the total inability to use hands and feet, and would, every night end up with me lying there exhausted and covered with sweat, all of which was made more difficult by the extra sheet the nurses would lay tucked in crossways across the bed, as well as by the plastic padded sheets they lay across the bed midsection, I guess because VETS leak, or something.  It quite honestly took me WAY too long to realize that if I took the electric headboard way negative and then the footboard way up, well, then gravity helped.

And that was only the beginning. Since several medications were being ingested, including pills that produce copious amounts of pee, 4 0r 5 times night it would be necessary to fire up the bed and get the headboard cranked up to a near sitting position, being oh so careful that my right hip was perfectly positioned next to the railing end so my feet could be pivoted out to the floor. Then I could put my head against the now nearly vertical railing and, sans hands, push my head against the railing to a sitting position, which I could do, eventually, in about 90% of attempts. The other times, well, it was cussingly frustrating as it was motorize back down flat, scotch, and like shampooing, repeat. Then it was pee in the duck.

I feel uncomfortable comparing the symptoms I suffered with those endured by people with spinal injuries. If I could claim some kinship with out first hand knowledge please allow that, because I felt pretty helpless allot of the time. I apologize if that sounds like a clumsy sentence. I could neither get into nor out of bed unassisted. Though I could pee using the urinal (duck), I needed help to the toilet, and quite frankly and humiliatingly, to wipe my ass.

The whole human waste issue is something that I found very interesting, and here I need to become very personal but, after all, this IS a medical discussion. CIDP rendered me in a situation that can best be described as causing, in the words of George Costanza, "severe shrinkage" in the area of the genatals. Coupled with the fact that I am not circumcised, I would find myself in the middle of the night having to pee VERY badly, trying to operate a SLOW MOTION electric bed to a position from which I could sit on the edge of the bed to use the duck, failing oh, 10% of the time and having to go back to step one, go flat and repeat the entire process. Then it was find the shrunken thing with fingers that could not differentiate between a small rubber ball and a small triangle in a bowl of dry rice in OT, skin it back and try to pee straight into the duck. I had my share of accidents and I SO dreaded the urine smell that seemed to follow me around. My fingers at this point were so useless, I was unable to button a button, even if it was on something that I was holding in my lap, or even snap the snap on my VA issue pajamas.

As a result of this inability to work even the simplest of snaps or buttons, I was frequently found sleeping with "everything hanging out", if you will and was on more than one occasion admonished like some sort of pervert to "cover up". That was very frustrating. It was a little dishearten to see how many of the symptoms of this malady are totally not known or understood. But if you think about it, how do you describe appendages that are totally numb yet wildly sensitive at the same time?

The hoyer lift is an interesting mechanism. It can best be described as critical care's engine hoist. Normally, when I needed to hit the john, three or so people would be needed to get me from the bed to a wheelchair and then to lift me to the toilet and then reverse the situation so it was peoplepower to the rescue. One of the nurses aids however, bithya, a tiny whisp of a thing would readily and expertly, by herself, employ the hoyer and have me on the john in 5 minutes. She is just one of the many fabulous people that helped me along the way. The hoyer is very safe but so damn humiliating. She made it less so by her professionalism and warmth. Those kids had a saying that we'll keep you as "clean as a whistle" and they did.

My first week or ten days, were spent in the neurological ward where the first line of treatment was intravenous Imuno-globulin or IVIG. This treatment was administered over a 5 day period and consisted of an IV drip of .1mg/hr for 10 hours followed by a saline solution for about 7 hours, rest then repeat for 5 days. Then it was wait for 3 weeks, oh, what the heck, let's give it another week. I experienced absolutely no feelings, good or bad from that procedure. Concurrently, we were also conducting physical therapy which seemed nearly pointless then as I was kinda like a wet noodle and could not even stand let alone walk. It was a frustrating month which seemed like at was just flittered away.

It was then decided that plasmapheresis was the next way to go. The procedure required a surgically implanted line from a vein in my neck which was then routed under the skin in my chest to two connectors which essentially hung over my right nipple. The first procedure took about three hours as my vital signs were carefully monitored and blood pressure maintained for the duration. It was determined that there was no deleterious reaction to the procedure and the required time per treatment was speeded up to about 90 minutes. The treatment was painless and had no affect on energy levels, in fact I felt quite normal although I would basically rest for an hour after being treated.
Much to my delight, within the first three treatments, which by the way were three times a week for the first couple of weeks then twice a week for a total of about 14 treatments. I actually began to feel better. By that, I mean I actually began to FEEL. First, I had a pain in my toe. It was sorta OW!, Yeah!! Then my right hand started to lose the numbness as the numbness seemed to creep down my arm and out the fingers. Within a day or two of beginning a healthy dose of steroids (Prednisone at 80Mg/Day) the severe pain that I had been experiencing in my hips and knees seemed to vanish and I could quite suddenly and easily lift my legs off the bed which was an absolute nightmare in PT. I felt right there that I would stand today, and I did. I am not some kinda macho man that thrives off of my virility, but if I carefully peruse the notes I made during treatment, there it is, about halfway into treatment, maybe iteration # 6 or #7, oh, it's in red! It says "Eureka!" That was the oh so sudden re-emergence of my manhood after many, many months of inactivity. Forgive my juvenileism, if that's a word, but some things really do matter to a guy.

I was able to stand from this point on with the exception of one day, about two days later. I'm not sure why that happened. Progress has been steady and I walked with assistance for 20 feet, then 40, then 60 in consecutive days.
In another week, I was using a walker and was covering several hundreds feet on the weekends with my family.

As I look back on the initial Physical therapy session, when I was undergoing IVIG treatment, my lowest of times, one of the exercises we did was on the rickshaw. The weight I was able to lift then was 6 pounds!! I was now doing 80 pounds. The numbness in my extremities was now localized to my lower feet.

On March 10, 10 days short of 3 months after arriving, I was transferred to VAMC Manchester, NH about 15 miles from my home to continue therapy and plasmapheresis if required. On March 12 I was given a pass to spend the night at home. Finally!!
At Manchester, I have an hour of physical therapy a day before and after which I spend as a patient taking the assorted meds I need and tending to a suddenly volatile blood sugar situation brought on by the steroids. Counter to what I expected, I have experienced 2 low sugar episodes, which caused me lightheadedness, sweats and mildly blurred vision. Adjustments are being made, I was attentively scheduled to be released on March 12th, but contracted pneumonia on the 18th. I have, in rapid succession, gone from a walker to a cane to walking with a limp with a sore left knee. I really feel that the proper treatment given at the proper time in the proper sequence was a huge factor for me.

I would be happy to answer any questions that may come up regarding my situation and will gladly share any info anyone may find helpful. My e-mail is bsulli4207@hotmail.com

Thanks for your patience
Brian Sullivan


Kates' Story

Hi, my name is Kate.  I "came down" with GBS in Jan.2005.  I was told I was lucky because I only had a mild case of GBS.  Mild meaning I wasn't on a ventilator, and my stay in the hospital was only 14 days.  I seem to be improving daily, with some good days and bad days mixed in.  My bad days consist of tightening around my rib cage ,chest area, and into my back.  This hasn't effected my breathing but makes me very anxious that it could.  The whole sensation is a very heavy feeling.  Has anybody ever experience this and if so, does it ever go away?  I had three days in a row when I did not have any tightness  and I was walking on air!  Yes, I'm getting better, there was an end in sight. Than on the fourth day the tightness returned and my hope of an end disappeared.  Reading others stories I have been very lucky and fortunate.  My problem is that I am a very impatient person, who doesn't like to be dependent on others.   The support I have received from family and friends has been outstanding, usually I'm one of the "givers."  I just want to be me again and be able to be Mom again to my daughters and a real wife to my husband.  Any suggestions from anybody would be greatly welcomed and appreciated.  THANK YOU!  Kate

Amanda's Story

My husband wanted me to write my story because after I was diagnosed with GB Syndrome in January 2004, he immediately did online research and he was terrified at what he read. I don't want in any way to diminish the incredible surivival stories of other GBS patients, but I do want to give hope to anyone who has just been diagnosed with GBS and to their relatives/friends. I had GBS and within three weeks, I was back to normal.

I live in San Jose, California, and at the time I was 32. We had a fun but hectic New Years in San Diego, and on the drive back up to San Jose, I started to feel like I was coming down with a flu. I was tired and dull. A day or two after getting back, I started getting the tingling in the legs. I thought it was a pinched nerve and went to the gym and stretched, but it didn't help. The next day at work, a Friday, I realized I wasn't seeing straight. I was having double vision in my left eye and the tingling was still there. My legs were feeling funny. I left work early and went to the doctor. He said if I was getting a flu, that could throw everything in my body out of whack. He said there was no blood clot or bleeding in my brain. I was shocked, because I didn't even think those were a possibility. He gave me his cell phone number in case it got worse. I went home and tried to convince myself I was fine. The next day all the symptoms were still there. I went for a walk and felt dizzy because of the double vision. While walking, I realized that I couldn't lift my left leg to get up on the sidewalk. I had to step up with my right leg instead. By Sunday I thought I had had a stroke. Most symptoms were on my left side and I couldn't raise my left knee at all. The tingling was all over. My husband and I went to emergency at the nearby hospital. By this time I was limping significantly and the double vision was worse.

In the emergency ward, they did a CT Scan and X-rays.  They couldn't find anything in my brain and they knew it wasn't a stroke. But after hearing my symptoms, the doctor said they would have to make arrangements to keep me. I was shocked again. I didn't think I'd end up being checked into the hospital for the first time in my life. I thought they'd find something and send me home with medicine. They didn't seem sure about what it was. They said there was a small chance it was MS, but more likely it was GB Syndrome, which I'd never heard of. They didn't make it sound too bad, so it sounded like I would be fine. I was more scared of MS because that's not curable.

I was checked into the hospital into Intensive Care.  They said they had to put me there in case my lungs got paralyzed or in case I fell from the leg weakness. I was in the hospital for nine days (about 6 in ICU and 3 in General Care). In the first three days, all they did was tests. They did an MRI which ruled out MS, and they did a spinal tap, which showed an increase of something in the spinal fluid which indicated it was definitely GBS. By the time they started the plasma treatment, my arms had started to get weak, but I could still get in and out of bed, I could use the toilet, and I could shower using a shower chair. They started the three plasma treatment which took effect immediately. I started feeling stronger after the second one. I did physical therapy every day. The deterioration was slow before the plasma treatment, but the improvement was fast after the plasma treatment. After the treatment, it seemed my body responded well, so they put me in General Care to fully recover. I felt better and better. At the end of the nine days, I was almost back to normal, and they let me go home.

After going home, I still had to go in for physical therapy, and after a few weeks at home, I had to go in for some nerve tests at the neurologist's office. He did some needle tests and shock tests, and both indicated that the nervous system was back to normal.

The whole experience lasted about a month, and I was never so paralyzed that I couldn't walk or move around. I never knew that GBS could get so serious because my husband didn't tell me. He didn't want to worry me. All I knew was that it was reversible, and I got the treatment, and it worked. Later when I was out of the hospital, I read more about it, and the stories were so serious and frightening that I was glad I hadn't known how serious it could get. I'm glad I know now because I can look back and think of how really really lucky I was. It has given me a new perspective on my life and on how fragile these human bodies really are.

Amanda Brijpaul


Ron's Story

  I had GBS in1973 also while in the USN. your story sounds about the same as mine, in some ways, at the onset ie, faking it etc. I went to sick call and sent back for about 2 weeks!! Before I just called an ambulance  to my barracks to get attention!!


  after I got into the hospital they gave me a spinal tap it was very painful they hit a nerve!!
  I was much more lucky than you, as the GBS only progressed up to the point of almost complete paralysis but didn't affect my lungs and i could eat.


  One thing is during my entire stay i received no medication other than headache meds. in about 5 months time. There was no treatment at the time! There were very few & isolated cases.


  All that was 31yrs ago and i did good until about 6yrs ago when the tingling started to come back 2 my feet it was ''scary'' i went back to the v.a. and thy told me I am  O.K. ""LIKE I WAS FAKING IT"  I now have painful neuropathy in my feet and it is spreading to my hands only those who walk [or stumble] a mile in our shoes can relate! I feel one can recover to a great extent!!




Jon's Story

My name is Jon.  I have a mild case of GBS as I was only in the hospital including rehab for twenty days. I have been home two weeks now. I made great progress every day for a week and then things started going south again. I have not gotten any better at all and getting numbness back in legs and arms. It never did get any better in my hands and feet. Is this to be expected or at least not unusual? The doctors are telling me to get complete rest. I am and no improvement. It has been six weeks since I came down with GBS. I know I am one of the lucky ones but still quite impatient. I am a very active and formally healthy man of 65 years. If any one has been in this approximate situation please email me how you are doing and the amount of time to recovery. AND, what if anything you did to speed your recovery.   jonlarge@aol.com


Kathleen’s Story


I was admitted to the hospital 3/8/05 with the diagnosis of a stroke. My first night in my room, I was put into bed by the nursing staff, told I could order food from the kitchen and shown a menu, which I could not reach, and they left and shut my door.  I could not sleep, so I got out of bed (I could still walk at that point) and sat/slept in a chair.  When I woke up I needed to go to the restroom, so I got up to go and could barely walk at all.  Needless to say I did not get the the restroom in time and was embarrassed so I tried to clean up the mess I had made and ultimately fell, unable to get back up.  The nurses came in and threatened to call men orderlies to get me up, if I didn’t get up myself.  I was of course in a small hospital gown, totally exposed.  I was mortified and somehow managed to pull myself up.  They got me back into the bed and “scolded” me for getting up without permission.  Mind you, I am 57years old.  Well, enough about bad hospital treatment, from what I read most of us have experienced it in some form or another.  The staff was puzzled by my progressive illness but continued to insist I had had a stroke.  I even suggested to them it was GBS and they scoffed at that.  I should have been more insistent, but I was very weak.  They kept telling me to use my “good” side to assist in moving me out of the bed.  I told everyone, there is no good side, I am paralyzed on both sides, but no one seemed to hear me!  I was sent home a week later, unable to walk, barely able to speak or swallow, unable to raise my arms or feed myself (not that I could eat anyway) and still being told I had had a stroke.  They told me to exercise!  I had to be carried upstairs in a sheet!  I was so scared.  I am lucky I suppose, I did not have the awful pain that so many gbs people describe.  I was just immobile, in so many ways.  One month after I returned home, the neurologist actually came to our home and said that I had never had a stroke or TIA, but he now thought I had ALS!  I lost all hope at that point and began telling my family my death wishes.  My family refused to accept this latest diagnosis and researched it on the internet and found that I did not have ALS at all.  The neurologist then said I had a spinal cord injury and wanted to do a mylogram.  We declined this $3000.00 test as we believed the procedure alone would have done me more harm than good.  The Dr. had planned a surgery on my spine following the test and I am sure I would never have survived that!  I however still did not know what was wrong with me.  I was told, by Dr’s, it was my gallbladder, a pinched nerve and a repressed childhood memory.  Chiropractors said I was toxic and that I needed adjustment.  Finally, a customer of ours came into our office one day and spoke with my husband and he said to bring me into his office.  I was able by this time to make it downstairs, with great difficulty, and into our car, so we went to his office.  He said, “you have GBS”.  Which I had said 3 months earlier.  It was amazing how much comfort that was, giving this thing a name and knowing, somewhat, what to expect.  Now, some 3 ½ months into this thing, I am coming to work everyday. My husband and I manage a mini storage and live on-onsite.  I try to work all day but have been stopping around 4pm.  I get very tired, but I can bounce back better now. 

We all have long stories and different ways we recover, but, as difficult as it is, I try to stay positive about my recovery. I know it will be slow but I am confident it will happen.  I will never be the same as I was, this has changed me forever. In some ways it is a good change, in some ways the person I was is gone forever.  I may be a more fearful person now, but I will defiantly take better care of myself in the future.  I just pray that anyone who gets this has a support system in place.  My husband is my rock, he has pulled me through this thing by his own sheer strength.  I can never express what he has done for me over all this time



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This page was last modified: June 16, 2005