Gary Kirkby, 37
My Story: Delayed diagnosis

I was 32 when I got a definite diagnosis of narcolepsy, but have endured the symptoms since my early teens. At the age of 13, doctors dismissed my tiredness as stress as resulting from the death of my grandfather and I got on with life thinking fatigue and scary nightmares were just something I had to put up with.

For the next 14 years I accepted these symptoms as part of my life and believed that the doctors diagnosis of stress was accurate. I struggled through school and went on to gain employment as a mechanic and later an HGV lorry driver.

It wasn’t until early 1999 aged 27 that symptoms severely worsened and I started having problems with my memory. I was constantly tired and started to suffer from sleep paralysis. It was terrifying.

Although I knew something was wrong I carried on, struggling to cope with the exhaustion of daily living and the demands of my job, which involved driving milk tankers from one farm to another. However, a few months later I collapsed and my wife was unable to wake me. I was admitted to Furness General Hospital, kept under observation and diagnosed with a suspected brain tumour.

I stayed in hospital for over two weeks and was given an EEG, blood test, MRI scan and numerous X-rays. Unable to make a definite diagnosis doctors referred me to a consultant neurologist at a hospital in Preston and I was transferred immediately. The neurologist I saw carried out further tests including a lumbar puncture, a CT scan and a sleep latency test. The results indicated that I was suffering from excessive sleepiness. I was discharged and prescribed anti-depressants and a small dose of Ritalin to help manage the symptoms. Just over a year later I was sent to Guys and St Thomas’ Hospital in London for more tests, and again the results indicated excessive sleepiness but were otherwise inconculsive.

For the next four years I continued on taking the medication, but found it failed to result in any improvement. I deteriorated rapidly. Tasks like cooking or having a bath became impossible as I risked falling asleep and hurting myself. I had to inform the DVLA of my condition and lost my HGV driving licence, which restricted my work, and I was no longer able to live an independent life. As a result my wife Helen became my carer and reduced her hours at work to provide me with the support I needed.

Finally in 2004 with still no improvement I was referred to a sleep specialist based in Newcastle. Within half an hour of the consultation the specialist made a diagnosis of narcolepsy with cataplexy and began a treatment regime aimed at easing my symptoms. It took a while to find the most appropriate treatment for me but I now manage my condition successfully with Xyrem and enjoy a far better quality of life.

It took 19 years to finally get to the root of my symptoms and discover the reason I had suffered for so long. I saw numerous doctors along the way but it was only on seeing Dr Reading at Newcastle that I truly found someone who was able to find an answer to my suffering and give a reason for sleep taking over my life.