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Monday, 5 November 2007


I was amazed to read this report in the 26th October edition of NewScientist. Not because it was news to me, but because I am constantly surprised that it should be news to anybody else. Matthew Walker of the University of California, Berkeley, concluded that, "It is thought that psychiatric conditions create sleep problems. We should entertain the possibility that it is a sleep disorder that is creating the condition."

As a sufferer of narcolepsy with cataplexy, I am only too well aware of the confusions that arise in diagnosis. My symptoms began when I was about 13 or 14, but I did not receive the correct diagnosis until I was 36. This is not unusual, and unfortunately my experience of referrals to psychiatrists for many years is not uncommon either.

In some ways I sympathise with general practitioners: narcolepsy is underdiagnosed and misunderstood. Although it is recognised as a neurological, degenerative condition, the diagnostic criteria to which physicians refer are still to be found in DSM IV, the primary diagnostic reference for psychiatric and psychological disorders. In one, large-scale study, the average delay between symptom onset and diagnosis was 17 years. Other papers available in the academic literature have documented case studies of confusion in diagnosis that have ended up with narcoleptics diagnosed wrongly with schizophrenia or adult ADHD.

My sympathy runs out, though, when the failure is not in the medics' available resources, but in their ability to listen without prejudice. I eventually found out my own diagnosis through the wonderful world wide web, but getting a GP to agree, accept and treat my condition was another matter. After several changes of GP, I finally found one who was prepared to give me the benefit of the doubt, read all my medical records and see that the evidence was there. Referral to a similarly open-minded local neurologist led to the test results that finally confirmed the diagnosis.

Since having the correct diagnosis and treatment, my life has changed immeasurably for the better. I have endless gratitude for the GP who finally listened. She calls it "simply doing her job". Not all do, and this is disadvantages the physicians as well as their patients, who can be a vast resource of anecdotal information that could inspire further lines of research.

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