Torbjorn Zetterlund

Sun 17 2010

I am a Guillain-Barre Syndrome Survivor

by bernt & torsten

My symptoms appeared a few weeks before Christmas 2001. I was in New Orleans at a conference and came down with the flu. I called on the hotel doctor, and he prescribed some antibiotics, and he gave me a shot of some kind. I think it could have been a flu shot that he said will get me on my feet quickly. As the doctor promised the next day, I was on my feet, back to the conference, still not feeling great but OK.

The day after I flew back to Toronto, Canada (home), I had a weekend with my family. This weekend, I started to experience some tingling in my limbs, and I did not pay too much attention to it. Monday came around. I went to work, the tingling continued in my hands, I had a meeting with my manager, and I mentioned the odd tingling in my hands. He said nothing to worry about, and you have been travelling a lot lately.

Wednesday that week, I flew off to Sweden took my kids with me as we were going to surprise my grandfather on his 90 birthday. During the flight, tingling intensified, and I started feeling it in my feet and did not pay more attention to the symptoms. Arriving in Stockholm, Sweden, I rented a car and drove to my dad’s house.

The next day was the birthday party. I had a change of clothes and got ready to go to the party’s location, and an odd feeling came through my head. I started thinking about what side of the road I should drive on. I got bewildered and had to stop and wait for a car to pass before I could carry on.

I blocked this thought out as a jet lag issue and did not think about it. The party was great, and my grandfather was so surprised to see my kids and me at the party, on the way back to my dad’s house. I stopped by the supermarket to get a grilled chicken. Back at my dad’s house, I ate the chicken with my kids. During the night, I got sick. I had the symptoms of food positioning, diarrhea, and vomiting, the whole next day, and I was back and forth to the bathroom. I started developing muscle pain, my tingling had reached the entire arm and legs, and muscle weakness had kicked in. I thought it was all down to the food positioning; was I wrong.

Over the next few days, my weakness got worst, the pain in my body increased, especially in my back. I asked one of my sisters if she could find me a chiropractic clinic, she found one, and we went there. I explained my pain in the back and asked for an adjustment. The chiropractor listened to me and said that the adjustment would not help, that there was something else going on, so I left and went back to my dad’s house. I got weaker and weaker; eventually, I asked my sister to take me to the hospital, I had not lived in Sweden for 20 years, and the health care system had changed. You had to go to a walk-in clinic where they determined if you needed to go to a hospital or not, so my sister got me to the walk-in clinic. I saw a doctor who examined me, he asked me to squat, and I tried, but was too weak and fell to the floor.

He immediately reacted and said, I do not know what is wrong with you, but you better get to the hospital, so he referred me. My sister drove me to the hospital; in the car, I got very emotional fell into tears thinking about my kids, what would happen to them, but I got through the worst of my mini- depression. When we got to the hospital, we went in through the ER; I got examined, and they would send me to the neurological clinic, but there was no bed available before the next day, so they recommended I go back to my dad’s house.

I went back to my dad’s house; I woke up and felt terrible during the night. I got distraught, so I called an ambulance to come and pick me up and take me to the hospital. On arrival, They took me straight up to the neurological department, and I slept on the gurney that they had placed me on. The following day they did a spinal tap and a few other tests, and then I was told to take a seat and wait for tills; the doctor was available. 

I had to wait for several hours before I saw the doctor, a few more test was done. Looking back it was Dr. House colleagues in Sweden trying to figure out what was wrong, first, the doctors have no clue, they eliminate possible illnesses, do some more tests tills they eventually come up with a diagnosis. I was informed that I had the Guillain Barre Syndrome, I had no clue what that was and what I was told by the doctors did not provide me with much information.

I got hold of my wife back in Toronto, who browsed the internet and faxed over the information to me about Guillain Barre Syndrome. The prognosis was good, but it would take some time before I would get back on my feet. Guillain Barre Syndrome is an acute inflammatory demyelinating polyneuropathy (AIDP), an autoimmune disorder affecting the peripheral nervous system, usually triggered by an acute infectious process. It is frequently severe and usually exhibits ascending paralysis starting as weakness in the legs that spreads to the upper limbs and the face along with the loss of deep tendon reflexes.

Basically, my nerve endings were dying, as the doctors put it. I was put on a heart machine to monitor my heartbeats, I was having high-dose immunoglobulin therapy and exercise moving my legs, the worst thing, in my opinion, was the daily blood thinning injections to prevent blood clots. For some reason they had to give me the injections in my stomach, that was a painful experience and I start dreading the mornings as that was the time they injected me.

After reaching the peak of my illness the recovery started, they got me out of bed, I started walking around with a walker. A few times I fell to the floor, as I have to walk with straight legs, as soon as I bent my knee I was on my way down. Towards the end of my stay, I was lobbing the nurses to take me down to the swimming pool, they gave in and I was given a daily swim, being in the pool the resistance is much less on your body, and with a floating device you could do leg and body exercise, I was recovering quicker through water exercises.

During this period in hospital, my dad and sisters looked after my two kids, they came every day to the hospital to visit, unfortunately, my sickness happen during the Christmas and New Year’s period of that year, and that time of the year is the darkest part in Sweden. With Sunrise around 10 AM and sundown at 3 PM, it must have been odd for my kids.

My wife flew over from Toronto Canada and she stayed for a few days before she and the kids headed back to Toronto Canada. One of the doctors that were looking after me, turned out to be an old school friend of my wife. You realize how small the world becomes, they had gone to the same international school in India, actually, the doctor had been in my wife’s sister’s class. The other amazing thing with my doctor was that he was working towards his Ph.D., and his thesis would be on the Guillain Barre Syndrome, you have to be lucky even in a bad situation.

I stayed for 5 weeks in the hospital before they released me to go back home to Toronto, Canada. The hospital arranged with my insurance company to get me back and they paid for me to be accommodated by a person of my choice, I wanted the nurse to go with me, but my dad ended up going with me.

On the day of the release from the hospital, I have transportation arranged to take me directly to the Airport, but the driver was a nice guy and took a detour to let me say goodbye to my sisters and grandfather. The insurance company had the decency to get me and my dad a seat in business class, so I could have some space, I must have looked like a rag doll to other passengers, by then I had lost 20 pounds in the hospital, pale and a sick look to my persona.

Arriving in Toronto, the insurance company had arranged for an ambulance to take me from Toronto Airport to the hospital. On arrival in the hospital, I had to sit in a wheelchair in the ER tills a doctor could see me. Seeing the doctor, I explain my situation and show my hospital record from Sweden, he said there was nothing he could do and sent me home, in his words I was on the re-bounce, and he gave me a referral to a specialist. At home, I set up an appointment with a specialist, got lucky 2 days later I went to see the specialist. I got a referral to get physiotherapy and to receive a nutrition specialist so I could gain some weight.

I slowly rebounded, it took 6 months from the time I got sick before I got back to work, my company was very accommodating and supportive during this period. From this experience I learned a lesson that you cannot take anything for granted, you should be happy with what you have. Today I am living a very active life, I commute to work by bicycle (25 km one way) and play various sports. From time to time a still experience numbness and tingling in my hands and legs, on occasion, I do have muscle weakness as well, but I enjoy what I have and I can live with it without getting depressed.

With the new flu season closing in, and the pandemic risk for Swine-Flue doctors are on the lookout for Guillain-Barre symptoms in swine flu patients. I also want to make you aware that, previous swine flu vaccine had caused cases of the Guillain-Barre in America. American officials rushed out a vaccine in 1976 following an outbreak of swine flu. Around 40 million people received the vaccine but doctors reported an increase in Guillain-Barre and 25 people had died before the immunization program was stopped.

There is always a risk to develop side effects in some individuals with any type of vaccine or medication, so be aware of your bodily sensitivity and make the right choice when the time comes to make a decision if you will vaccinate yourself or not.

I hope my story has given you a view into a little know syndrome by the name of Guillain-Barre.