Lesley's Story

I contracted Campylobacter on a holiday in Turkey in August 2011.

On our last day after drinking too many Margaritas by the pool we waited ages to be served on a lovely rooftop terrace restaurant. After dark my chicken dish arrived. I could just about see it was red around the bone however in the moment, distracted by my husband dancing on the table, I couldn't be bothered to send it back and just nibbled around the edge. Bad move! Really bad move!

I felt quite unwell on the flight home the following day and then the usual food poisoning problem of food going straight through you, to put it politely.
Thinking I would loose a few pounds I did not visit the doctor for a few days then couldn't get an appointment, so spoke to a doctor on the phone who advised me to drop a sample in. By the time the doctor called back with the result, a few days later, it had cleared itself.

A week later, the 4th September, the first day the children returned back to school after the summer holidays I woke up feeling very strange indeed.
Unsteady on my feet, a bit spaced out I went to work. I ate out at lunch and strangely my lovely looking lunch tasted awful and my teeth felt painfully numb. My feet and hands were also numb.
That night my children noticed that my eye had drooped. Being a sign of a stroke I visited an emergency late night clinic. They ruled out a stroke, however could not identify the problem and advised me to visit the doctor the following day.

Although I did this, my doctor was also mystified and sent me for blood tests. 2 days later, without the blood test results I returned to the doctor as it was getting worse and I was so worried.
They asked me to book an x ray which were not available until the following week, somehow (with dizzy spells and blurred vision) I managed to drive myself to the hospital there and then and asked to wait for an x ray appointment which they kindly did. I was shocked after the x ray when they said results in 5 days! I was desperate by this time, what the hell was wrong with me!
My symptoms that week were getting gradually worse, I had to hold on to something to walk around, numbness, my eyesight was deteriorating, so sensitive to light, all food tasted awful and terrible back of the head, neck, and shoulder pain.

By the Saturday afternoon at home I was extremely worried particularly as my speech was now becoming slurred.
Following a call from a friend, they were alarmed and came over and drove me to casualty.
(Unfortunately my husband was at a football match)
I had done the usual. No, you go, I'll be fine!
At casualty my bum hardly touched the seat in the waiting room before I was rushed through. I was thoroughly examined by the Stroke team, to no avail, no diagnosis.

I was admitted onto a ward and monitored and booked in for various tests i.e.MRI scan. Then soon transferred to a Respiratory Ward.
This was a scary experience, when you cannot walk, talk, sleep, eat or see and are on a ward with lovely but very poorly elderly people moaning in pain, coughing, being sick etc and not being able to see them, talk to them or help them.
(Also, I would I would like to add it was disgusting that they could not watch TV as they had not paid the extortionate £5 a day!, they kept asking for it, how terrible!)

Lucky enough I was opposite a young patient in for observation who cared and mothered all 5 of us on our ward as the nurses were so busy.
Together obviously with my family and friends she was my saviour at the worst period of my illness. I cried when she was discharged.

My eyesight was still getting worse, double vision and so sensitive. With painkillers for the most horrific pain at the back of my head and shoulders together with no food, I was also being sick.

After more tests, the doctors, who were wonderful and very good explaining everything, told me I may have Guillain Barre, although they could not fully confirm this as there were some symptoms that weren't running true.
They were closely monitoring me with regular blow tests etc to ensure it was not effecting my respiratory organs.
I waited a few days dreading the spinal tap planned, which I had heard horror stories about, (Despite being a complete wimp this was surprisingly ok, I believe it is all in the experience of the doctor).
Immediately after this test, after 4 days in hospital, they finally diagnosed Miller Fisher syndrome.
I felt obviously relieved to know for sure what was wrong but still terrified in case it affected my breathing and I had to go on a respirator, I have always had a weak chest.

Due to the pain of the daylight in the ward (By this time I needed my eyes shut and 2 sets of eye patches) and maybe the noise my many visitors were making they moved me to a private room, where I was also allowed one visitor all day long to look after me, which was wonderful. Thanks mum!
After confirmation from the Neurologist, who confirmed my eyeballs were paralysed they started the immunoglobulin treatment intravenously. Following 3 days of treatment, I was allowed home.

Although I did not feel much better, apparently there was a slight eye improvement. What amazed me was that I was sent home with NO follow up whatsoever. I was allowed to call the ward if I had a problem within 24 hours, if not requested to refer to my doctor.

This was the worst thing, my doctors new nothing of Miller Fisher syndrome, and I had NO medical support whatsoever, just what my family read on the Internet. My doctor wouldn't visit and when I asked for physio they told me there was a 3 month waiting list.
They did however prescribe various painkillers and tablets over the phone. I was only eating Ready Brek and soup and had lost 2 stone. Which was needed by the way.

Gradually after returning home I started very slowly improving. I tried an osteopath for my pain, as not being able to rest my head down because it hurt so much was the worst thing, but the following day after each session it was agony, so I stopped that. Within 3 weeks I started taking off the patches occasionally, terrible double vision though, my eyes were not working together.
A nurse friend had managed to get me a physio and neurologist appointment which was great for peace of mind that all was normal and ok.

The physio also gave me some exercises that helped my speech, mobility and eye sight, and continued to see me every week until I was happy.

Around 5 weeks after being discharged from hospital I managed to read emails etc and could therefore start working from home, a bit at a time.
I have a themed party/ wedding business.
My speech started to improve together with my mobility and taste.
It was a great boost to be back working and relieved the family pressure, my poor husband and mother in law were doing everything everything, I had a butler, cleaner, cook, nanny.
They were wonderful!

3 months later, following an eye test (Opticians too had never heard of Miller Fisher) I was back to driving, and 95% better. The last symptoms to go were the eye pain when I looked at the extremeties and the numbness in the fingers.
I am writing this 4 months following the onset of my illness and currently have a cold.
Not sure whether it is connected but I am unfortunately now getting moments of the strange dizziness, nerve ending feelings, particularly when moving fast. It is so hard to describe the feeling.
I have read though that recovery can have some relapses so praying this is a short one.

Obviously I am so relieved to have made such a speedy recovery.
Its a bit like childbirth, afterwards you forget how bad it really was, which is why I wanted to write it down and hopefully help others with my experience.

The one symptom that is unexplained is the taste thing, I cannot find anyone else who experienced this. I love my food and particularly obsessed with Haribo sweets.
Everything except Ready brek and soup tasted awful, I really could not eat anything else and believe me I tried, especially sweets were disgusting.
The only explanation I can think of is if that the gagging reflex was paralysed.
But why such a bad taste?

I too have more awareness of food hygiene and DO NOT reheat rice as I read of a case after this, however I have read Miller Fisher can come after various infections, even a flu jab.

My tip is never let an illness drag on, contact your doctor and insist on an appointment immediately and if you are not happy, persue vigorously or go to Accident and Emergency.