Question 6

6.) What can you tell me about the reasons why you didn’t think you had narcolepsy for so many years? What were other healthcare professionals telling you that had you convinced it might be something else (depression, laziness, etc.)? What was the straw that broke the camel’s back in convincing you that you have narcolepsy? For most people, diagnosis takes a very long time. Why do think it took so long for your diagnosis to happen? Once again, if you were diagnosed in a short period of time, just say it didn’t take a long time at all.

I think I had narcolepsy undiagnosed for so many years because of a lack of knowledge of the symptoms of sleep disorders in general. I also experience the symptoms of sleep apnoea and insomnia but was never taught that these symptoms might be indicative of a substantial medical problem so as a result I never specifically explained them to any doctor while searching for a cause for what I thought was possibly bi-polar disorder, schizophrenia, diabetes, depression or fatigue.

The one symptom that threw me off for years and now has me misdiagnosed as a possible schizophrenic is the hynagogic hallucinations. Complaining of hearing voices talking to me in the morning or before I sleep has had me prescribed various anti-psychotics none of which abated my symptoms and all of which greatly exacerbated my EDS.

The straw which the broke the camels back was the web site produced by Stanford University and the web site produced by Wikipedia which led me to it. Once I read even just a few symptoms of narcolepsy I knew that is what I had. It was like a revelation to me that explained every single circumstance in my entire life. The one line that had me finally break down and cry was "The symptoms of narcolepsy are devastating." And, at that moment I knew I was staring my diagnosis in the face because until that day my life had been unexplainably devastated by recurrent bouts of cataplexy and EDS. It has also devastated the lives of my family and those around me due to my non ability to comply with societal norms.

Like most people my diagnosis of narcolepsy has been hard fought and not successfully won yet. While I am on anti-depressants for cataplexy and modafinil for EDS I am still currently looking for a successful diagnosis of 'narcolepsy' from an accredited doctor or clinic or facility. I have only a long history of symptoms and one sleep diagnostic indicative of a diagnosis of narcolepsy but the clinic which I attended has sent me a letter refusing me further analysis and consideration because in frustration with what I believe was medical malpractice on their part I have threatened Dr. Jonathon Fleming of the UBC Sleep Disorders Clinic with suit.

The reason I believe I am being denied medical alternatives to Dr. Fleming's non diagnosis of my sleep disorder symptoms is because of the number of franchised medical clinics involved in my medical treatment here in Vancouver British Columbia, Canada. 30 some odd medical clinics I visited complaining of the symptoms of narcolepsy each and every one of which did not refer me to a specific sleep disorders clinic nor doctor thereof. A medical malpractice suit of rather gargantuan proportions if I am ever to receive a proper diagnosis of narcolepsy.

Which I do not believe I will receive here in Canada because I feel that Dr. Fleming is protecting his colleagues from a very substantial malpractice lawsuit on my behalf by denying me that evidence of diagnosis in court.