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I am a Guillain-Barre Syndrome Survivor


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 flue shot that he said will get me on my the feet quickly. As the doctor promised 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), had a weekend with my family, during this weekend I started experience some tingling in my limbs, 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 mention about the odd tingling in my hands. He said nothing to worry about, you been traveling allot 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 start feeling it in my feet’s as well, I took a few drinks on the flight 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 change and got ready to drive to were the party was being held, odd feeling came through my head, I start think what side off the road should I drive on, I got really confused 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 any more about it. The party was great, my grandfather was so surprised seeing me and the kids, on the way back to my dad’s house. I stopped by the supermarket as I was craving for Swedish food, I got back to my dad’s house and I ate what I had purchased. During the night I got really sick I had the symptoms of food positioning, diarrhea and vomiting, the whole next day I was back and forth to the bathroom. I start developing muscle pain, my tingling had reach the whole 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 sister’s if she could find me chiropractic clinic, she found one and we went there I explained my pain in the back and asked for an adjustment. The chiropractor   listen 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. There 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 determine if you need 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 do a squat and I tried, but was to 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 gave me a referral. My sister drove me to the hospital, in the car I got very emotional fell into tears thought 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 were going to send me to the neurological clinic but there was no bed available before the next day, so they recommended me to go back to my dad’s house.

I went back to my dad’s house, during the night I woke up and were feeling really bad I got very worried, so I called an ambulance to come and pick me up and take me to the hospital. On arrival I was taken straight up to the neurological department were I was on a  gurney to earlier morning, in the morning they did a spinal tap and a few other tests, then I was told to take a seat and wait tills the doctor was available.  I had to wait for several hours before I saw the docto, 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 has no clue, they eliminate possible illnesses, do some more tests tills they eventually came with a diagnostic. 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 as an ascending paralysis starting as weakness in the legs that spreads to the upper limbs and the face along with 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 heart beats, 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 cloths. 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 recover 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 everyday 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 the darkest part in Sweden. With Sunrise around 10 AM and sun down at 3 PM, it must have been odd for my kids.

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

I stayed 5 weeks in the hospital, before they released me to go back home to Toronto, Canada. The hospital arrange 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 has 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 grand father.  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 passenger, thin I lost 20 pounds in hospital, pale and a sick look to my persona.

Arriving in Toronto, the insurance company had arranged for an ambulances to take me from the 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. Home I went and the next day 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 learnt 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 (25km 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 flue season closing in, and the pandemic risk for Swine-Flue doctors are on 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 40million people received the vaccine but doctors reported an increase Guillain-Barre and 25 people had died before the immunization programme 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 times comes for to make a decision if you will vaccinated your self or not.

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

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