I was spending time overseas in May 2004. The day before I became ill I had eaten a sandwich in a bar and some chicken in an adjacent take-away shop. The following day seemed to start normally. At about 7 o'clock I that evening I went to restaurant to eat. I ordered a glass of wine before ordering my meal. I soon began to feel strange, something hard to describe and something I had never experienced before. Someone I knew came to talk to me but I had to make my apologies and leave.
Fortunately I only had about a mile to drive home - it seemed like the longest mile I had ever driven. I felt dizzy and although it was a warm evening I felt very cold and started to shiver. I soon arrived home and went straight to bed. I felt exhausted, I left my clothes on but had the energy to kick my shoes off. I felt more and more cold and was unable to sleep or move. Then the diarrhea started - I had to visit the bathroom time after time after time. After each visit I struggled to find the energy to get back to bed. The cold feeling I had seemed to worsen. At around 2am I somehow managed to find the energy to put an electric blanket on the bed. This seemed ridiculous in the month of May however I slowly warmed up and began to feel a little better. Then the sweating started accompanied by the shivers. I couldn't sleep but managed to find a reasonable film on the T.V. to watch. After this I nodded off but was waking three of four times an hour to visit the bathroom. I would later discover I had food poisoning which was diagnosed as Campylobacter.
The following day the situation continued. I should have gone to the doctor but I didn't, I thought I would just recover. The situation continued for another four days. This was enough so I went to the doctor. It was only a short walk but this exhausted me. I was really only concerned that I didn't need the bathroom while I was away from the house. Unfortunately the surgery was fairly busy and I had to wait. Then I collapsed in the waiting room. Someone went into the doctors office and he came out - I was in there in an instant. I told him the events of the past few days. He gave me some imodium. This was a mistake. I should have been admitted immediately to hospital as I had started seriously dehydrating.
I started to recover and the visits to the bathroom became less. It was such a joy when the diarrhea stopped. Within days I noticed my long range eyesight was worsening. This didn't bother me as I wear glassed so I continued life as normal and thought about having an eyesight test on returning home. I had no idea that everything was about to become a lot worse!
Thirteen days after the diarrhea started I woke one morning and though to myself that everything felt just perfect. That was until I tried to move. My arms didn't work properly. I swung my legs over the side of the bed and realised I didn't have proper control of my legs. I had no idea what was wrong and after what I had been through in the previous days I definitely didn't want anything else to go wrong. I rang a friend to explain what had happened and decided to have an easy day. I was fooling myself into believing that whatever was wrong would go away. It didn't. That night I went to bed early and slept well. When I woke the next morning it was the same as the previous morning, only worse, much worse. I rang the doctor as there was no way I could get myself to the doctors office. I explained what had happened and he told me to get myself to the hospital immediately. I called a taxi which seemed to take a lifetime to arrive although it was only minutes. Fortunately I knew the taxi driver. Normally we would chat however he soon realised that something was seriously wrong and we sped off to the hospital, a drive of fortunately only fifteen minutes.
As we arrived at the hospital I threw some money at the taxi driver hoping it was enough. I was in no condition to be able to count money. I opened the door and nearly fell over. Next I saw a man in a white coat coming my way from the hospital's Accident & Emergency Department. By now I couldn't walk and he helped me inside and I went into a room where I was helped onto a bed. Within moments there was doctors, nurses and who knows who else in the cubicle.
I knew I was in hospital but I had no idea what was going on around me. No-one would tell me anything. Then a senior neurologist arrived and examined me. My hand and leg movements were not smooth and I was now seeing a sort of double vision. After even more doctors I was finally taken to a ward however nobody was able to tell me what was wrong with me. Soon after I was transferred to a private room. I was now oblivious to the time until some food arrived so I guessed it was around 6pm. I couldn't manage to feed myself so a nurse helped me.
News came around that the lady neurologist had to depart for a flight to Italy to attend a seminar. This upset me as I had trusted her. Before she left she told me I had something called Miller Fisher Syndrome, a most unusual and rare illness that would take ten days before the recovery period would start. This was in fact not true and they told me this purely to physiologically give me hope. They had been able to identify MFS because my eyes were pointing in different directions. This was caused by a muscle problem and explained the double vision.
All this happened on a Friday and I wrongly assumed that I wouldn't see much of the doctors until Monday. It then transpired that I was the centre of attention due too the rarity of my condition. Over the weekend my condition deteriorated sharply. I was on a drip that I later discovered was some sort of blood plasma. These bags of blood plasma were changed twice daily. It was hot and I was uncomfortable. On the Sunday night my condition worsened further and I felt really ill. I was having blood test taken each morning and evening by student doctors. This was painful and I asked if a qualified doctor could do this. The hospital obliged. I was also uncomfortable by the eight or nine trainee doctors present twice a day when the regular doctor did her rounds.
On Monday my condition worsened further and I remember wondering where all the trainee doctors had gone. I was so ill at this point they decided having so many people in my room was too much for me. My eyesight was worse and I was shaking badly. I just kept thinking that after the initial ten day period I would start to recover.
Tuesday came and I felt no worse than I did on Monday. My breathing had become very shallow. I didn't know at the time but respiratory problems are associated with MFS and I was in danger and close to respiratory failure. They wanted to transfer me to another hospital with the necessary equipment for people with respiratory problems. I later discovered that I was too ill to be moved.
Wednesday came and I was informed that I was out of the danger zone and beginning to make a slow recovery.
The next few days I felt slightly better but not to ant great extent. The doctor decided I no longer needed the blood plasma. I had also been informed that the true recovery period would be anything up to six months although everything should begin to get better within two months. I had been told the vision, arm and leg coordination problems would disappear in reverse order to the way they appeared. During a conversation with the doctor I said that I felt I would recover better at home. It was agreed I could go home on condition that someone was there to help me and I left the hospital the following Monday.
I was really happy waiting for the taxi to take me from the hospital for the fifteen minute ride home. However after about ten minutes in the car I wasn't sure if it was such a good idea. The motion of the car made me feel dizzy and I had to keep my eyes shut because of the double vision. Much to my relief we soon arrived. This short car journey had exhausted me. All I could do was go straight to bed.
I soon felt a little better and having been out of electronic contact for over ten days I decided to check my email unaware of how difficult it would be. Locating and pressing the button to switch the computer on was a nightmare even with one eye closed however I managed to do it. Then came entering the code to start Windows. This proved too much and I had to give up. I just didn't have the coordination from my eyes or hands. It was another ten days before I succeeded.
I became somewhat depressed. The double vision, arms and legs not working properly. On one occasion, when I was at home alone, I thought I would make a cup of tea. Nearly a big mistake. My arms weren't strong enough to safely pour boiling water from the kettle. However I managed. Then came the task of carrying the cup of tea to my bedroom. In hindsight this was a stupid thing to do. The cup felt weightless and the potential for an accident was high.I remember being told the symptoms would disappear in reverse order to their appearance and this proved so. It was depressing at the time, lying in bed wondering if my eyesight would ever really return to normal.
My condition continued to improve albeit it slowly. I tried watching TV with one eye closed. This was tiring but better than lying in bed all day doing nothing. My sleep pattern was all over the place. Mainly sleeping during the day and awake at night. As time went by I was able to use my computer but initially only with one eye open. Towards the end of July I felt it was time for my first outing since leaving hospital. A friend took me to a local cocktail bar one evening. I needed help to walk mainly because of my eyesight. I managed three and a half hours before needing to return home with no major problems apart from some people using cameras with flash. My eyes were very sensitive even though I was wearing very dark glasses.
Improvements came slowly but surely and at the end of August I went on a short holiday with my girlfriend. I made the mistake of thinking I was better than I actually was then came disaster. We were walking along a beach road when I thought it would be nice to walk along the shoreline. I was being careful but my vision was not as good as I thought. There was about a two inch dip in the sand, I hadn't seen it and over I went. Fortunately this happened right by a doctor! It was off to hospital again, this time for a broken ankle!
From this point on everything seemed to slowly improve although it was not until early December that I decided to leave and fly back home.
My vision was back as was the use of my arms and legs.
It was on a check up visit to the neurologist that I discovered I had no reflexes in my arms and legs and still don't have. No doctor has been able to offer an explanation for lack of reflexes nor for the fact I have bad balance in my legs.
Life slowly returned to normal apart from being hindered by the lack of balance that occasionally results in stupid minor accidents however usually only while walking.
Contracting the Campylobacter which led to Miller Fisher Syndrome made me very aware of safe food preparation. In fact I am now paranoid about it. Never again to I want this horrible disease. I needed to find information. I talked to various hygiene specialists as well as turning to the Internet.
No more washing poultry before cooking it. I discovered splashing from washing it could spread an infection and also discovered that if poultry is cooked at 100°C all bacteria will be killed off. Any re-heated food in my kitchen is now done so at a very high temperature.
Plastic and wooden chopping boards were thrown out of my kitchen and replaced with glass ones and they too will be thrown out if scratched.
I am very fussy about what I eat in and at what restaurants. Scenario: A busy chef is preparing a chicken and let's assume it infected with bacteria. He may cook the chicken correctly which will kill that bacteria but imagine before doing this he had to prepare a salad. Because he was so busy he didn't wash his hands properly. Result - he has transferred the bacteria from the chicken to the salad.
My friends tell me my Miller Fisher Syndrome experience has made me paranoid about food hygiene. Well, it probably has. The whole ordeal was the worst experience to date in my life! Lying in bed wondering if my eyesight would ever return to normal was just horrendous.
I am not in the medical profession therefore not qualified to give medical advice so what is published below is only my opinion and personal recommendations based from my MFS experience.
More information about MFS can be found on the Links page.
John