My Experience with Guillain-Barre Syndrome

In 1993, I was 42 years old, and really cruising along pretty good in all aspects of my life. My 165 pounds was well distributed on my 6 foot frame, and I kept in shape by running about 40 miles a week. I watched what I ate very closely, drank alcohol sparingly (okay, not sparingly, but I didn't get out of hand), and didn't smoke, having kicked the habit back in 1987. In short, I was the picture of health, and I had a general sense of well-being that had me feeling like I had boundless energy every day. My professional life was a success, and there were no problems in my personal relationships, and I attributed my good, healthy mental state to my physical condition.

On the last Monday in June I woke up with an odd tingling sensation in my feet--I didn't think much about it at the time because I had helped a friend move a houseful of furniture the day before and figured that it was somehow related to that physical activity. On Wednesday, I awoke with the same prickly sensation in my hands, and I still didn't feel concerned--I just continued with my normal day-to-day activities.

Over the next several days, I began to notice a general body weakness, and I found that I was becoming clumsy with my fine motor skills--buttoning a shirt became difficult and writing with a pen got a little tricky. Over the weekend, I began to develop problems with my gross motor skills--going up and down stairs and getting in and out of an automobile started to get difficult. I also started experiencing severe and exquisite pain in the soft tissue of my back.

Finally, on Tuesday, eight days after noticing the tingling in my feet, the pain became so excruciating that I knew something was wrong. I was living at the Sheraton at the time, because I had sold my house and had to wait about ten days to get into my new one, so at about 10:00 that night, I shuffled down the stairs at the hotel like a ninety year old man, got in my car and drove to the emergency room. I walked into the hospital and those were the last steps I took for over three months.

The emergency room physician took a history from me and diagnosed me on the spot--he said that he thought I had Guillain-Barre' Syndrome, although he indicated that he would have to do a couple of tests to rule out heavy metal poisoning and Lyme's disease. He took a spinal fluid sample (that was fun) and because of the elevated protein levels, he identified my problem as GBS.

What is GBS? No one's really sure. The syndrome was discovered in World War I by two French doctors (hence the French name) who noticed peculiar symptoms of total and partial paralysis in some of their patients. The modern consensus is that GBS is an immune system disorder that is triggered by a viral infection--it's not caused by a virus, just triggered by it, and that's an important distinction. The prevailing thought is that the patient produces an antibody in response to a particular virus, and then has an allergic reaction to that antibody. This results in the destruction of the myelin, the coating of the nerves, and causes various degrees of paralysis in its victims. For some, the paralysis is complete--many patients have to be placed on a respirator to be able to breathe. If you don't die from the syndrome, you can recover most functions, but it varies from person to person. I'll tell you more about how it affected me in a moment.

Currently, fifteen people out of one million get GBS every year--pretty good odds for me to hit that jackpot, huh? GBS has nothing to do with age, race, environment, season or gender, but I suspect that genetics and allergies may play a part in the illness. What is really frustrating about GBS is how little the medical community knows about it. I think I had the best medical people available on my team, but it was a little disheartening to realize how little anyone knew about the disease. In my city of about 50,000 people, my case was the first one they had seen in almost two years, but two more cases came into the hospital during my stay.

It took about two weeks after my admission into the hospital to bottom out--I was totally helpless and unable to move my arms and legs. I lost my cough reflex and my ability to swallow, which resulted in somewhat of a crisis when my lungs began to fill with fluids. I had a cathater inserted because I couldn't urinate, and a stomach tube surgically implanted so I could take nourishment. It was pretty weird watching your dinner being poured down a tube in your abdomen, let me tell you. There was also a tube placed in my femoral artery so that the doctors could perform a plasmapharesis, a procedure where my blood was run through a dialysis machine, and the plasma discarded, the idea being to rid my body of the antibodies that were causing the problems.

I never lost my breathing function, although the doctors watched it closely for about thirty days. I was literally gasping for breath at times, but I was moving just enough air to avoid being placed on the respirator. My doctors attributed this to my physical condition and the fact that I had a strong cardio-vascular system from my running regimen.

After about forty five days, I began to recover some of my functions. The reflexive functions that I had lost returned gradually, and I finally was able to have the stomach tube removed and eat regularly. As each day passed, I regained the use of my arms, and started to get some movement in my legs.

After my immediate medical problems were resolved, my doctors ordered a strenous schedule of physical therapy, including occupational therapy (learning to use your hands again), and speech therapy, because of the paralysis of my facial muscles. I literally had to learn to walk, talk, and use my hands all over again. Some of the tasks that my physical therapists (I called them physical torturists!) asked me to do seemed silly and pointless, but I soon realized that they had a purpose. With their help, I was able to regain all of the functions and abilities that I had before I contracted GBS.

On October 17, 1993, I was discharged from the hospital, weighing 117 pounds and looking a little like a giant stork because I had braces on each leg and a cane in each hand. My doctors told me to drop a cane or a brace when I felt strong enough, and by Thanksgiving Day, I was walking unassisted, if a little shakily. By the next summer, I was running three miles a day, and the whole episode seemed to be just a bad dream. In fact, this is the first time that I've ever written of the whole experience.

When I came out of the hospital after 3 1/2 months, I was flat broke and had serious doubts as to whether I would ever be normal again. I'm happy to report that I made a strong comeback on both accounts, and if you saw me today, you'd never guess that I had been through the experience that I've just described to you. In fact, I might even challenge you to a footrace or a distance race, and let you pick your poison!

Seriously, GBS is a very serious disorder, and many people die from it or spend the rest of their lives in a wheelchair. I consider myself very lucky to have made a full recovery, but my heart goes out to those who haven't been as fortunate as me. It's a very rare disorder that still remains shrouded in mystery, both as to cause and treatment.

There are many support groups out there for victims of GBS, and each GBS survivor will be more than willing to offer any assistance or answer any questions that friends, relatives, loved ones or victims may have. I'm available to help--my e-mail address is on my profile page.

Thanks for reading.