David's Story

Whoever Miller Fisher was, I am grateful, because having a diagnosis is far better than not knowing what’s going on.

Miller Fisher Syndrome hit me on 1st March 2013, when I was 10,000 miles away on holiday in Australia. I opened my eyes that morning and could see two of everything, two lights hanging from the ceiling, two mirrors, two windows in the wall. Thinking back I had felt slightly unsure on my feet the day before but had simply resolved to get my glasses checked on my return home.

I struggled downstairs, holding both handrails and announced to my daughter I was staying with that there was a problem. Then it all kicked off. Straight to the doctor’s who found blood pressure, pulse, etc. normal but realised something was wrong. So by lunchtime I was having a CT head scan at the hospital. I knew that what they were looking for, at the age of 59, was a stroke or possibly even a tumour.

The results 3 hours later proved negative and to my relief I was diagnosed, wrongly, with sinusitis and sent away with some antibiotics.

By the next day I was having doubts. My uncertain walking, which I had put down to double vision, was getting noticeably worse and by day three I had to hold on to someone to stay steady. So that evening it was off to another doctor who, realising there was something seriously wrong, sent me off to Accident and Emergencies at Royal Perth Hospital, with a note to see the neurologist on duty. These guys were great and within an hour they had identified the separate symptoms of double vision, lack of eye movement, difficulty in walking and a total lack of reflexes and diagnosed, with a certain degree of excitement, Miller Fisher Syndrome.

They said a bout of flu 3 weeks previously had probably triggered my own antibodies to attack my nerves. I was admitted straight away but at least I was going to be looked after and hopefully treated.

The next two or three days were tough. I felt tired, nauseous and unable to read, but determined to maintain the dignity of showering or visiting the bathroom by myself. The doctors did not give me any treatment but just watched to make sure things did not get any worse and, after three days, I started to feel a little better. They did offer me blood plasma or replacement treatment, suggesting it might speed recovery but admitted there was very little evidence. They seemed happy when I suggested leaving it unless things got worse.

Luckily things did not get worse and I was discharged after 5 days observation on the promise that I would be well looked after. My walking began to improve soon after. With an eye patch on either eye I was able to go out on my own and I started work again 4 weeks after I had gone into hospital. The pirate jokes came thick and fast but at least the patch enabled me to look at a screen and cross the road safely.

For reassurance, I saw another neurologist on my return to the UK, who recommended an MRI brain scan just in case. This was all clear and his advice was to carry on as normal until it got better, which he promised it would.

But depressingly, two and a half months after contracting Miller Fisher, I still had complete double vision, seeing two clear images a long way apart. Then quite suddenly things began to improve. The images moved closer and I began, with some effort, to be able to focus on faces.

Now, four weeks further on, I have just played my first game of 5-a-side football since it happened and was as good - or bad - as I always was. Life is now normal again.

Throughout the illness I was heartened and reassured by the stories I read on this website and, if you or someone you know, has this syndrome, I hope you will be too. It does get better, believe me.