I can personally vouched how doctors can be timid on diving into the deeper darker unknown ocean of Narcolepsy. I was diagnosed 4 years after I started having the symptoms, and I still followed through with my research. My persistence stemmed from the stagnant thought to fend for myself with the maddening desire for an answer as I live through each day with invisible illness.
In my case, on that 4th year I was already equipped with labels in my mind for these repeating malfunctions or abnormalities, and aligned it with the closest description from the articles. I had enough already of short-handed answers, maybe’s, and in-betweens, so I made sure I had references. My two neurologists had to review their books as I established my symptoms and my sufferings. The first one contented my theories with a prescription to take PSG and MLST, however these tests are not available at the hospital where she is based. Only 5-star hospitals with sleep laboratories can perform the tests and are very costly.
After months, I went to one of the recommended sleep labs and the staff won’t entertain without a consultation from their resident specialist. The sleep specialist was actually the game changer then. She believed me from the get go. That was because her medical sales representative had witnessed my cataplexy attack. The med sales rep was seated next to me on queue. I came right from graveyard shift then and while waiting, it happened. She jumped out of her seat when my head dropped halfway on her lap. I couldn’t see her face ‘cause my neck was dunked in but I could just imagine how shocked and flustered she was. She gushed, stood up and she threw my head away that slammed back on the wooden furniture. That incident happened just few minutes before she entered the sleep specialist’s clinic.
When I stepped in, the sleep doctor looked enthused, and all the time we were talking she had been so awed and attentive. It was the only time that I have ever felt someone actually knows all these things I was talking about. She told me that I had just experienced a cataplexy attack outside her clinic and talked about the tests that I must take because most possibly I have Narcolepsy. She told me also that she only had 1 patient diagnosed with N and he is just a boy. thus she find my case very rare and interesting. Unfortunately that was the first and last time I had talked to her. She was not affiliated with my healthcare provider so I cannot use my benefit from ex-company for the sleep tests or even just consultations with her. I never saw her again since, and met instead my longest reigning neurologist in the same hospital.
He was the 2nd neurologist/3rd doctor who believed that I have Narcolepsy and he took a different approach. He was older and he was so sure about it that he lectured about not needing to undergo the tests ‘cause in the earlier days there are also no laboratory assessments, and it is impractical and should not limit patients who can’t afford to still be diagnosed and treated. I got his point and was really thankful he prescribed me the meds. Only one thing I don’t always understand and that is the prescription. My year 1-3 doctors also did good in 'not explaining' which projects how their time is truly gold, which is. So my busy doc is always wrapping up when I’m just starting to probe. He will just tell me to lose weight and to exercise regularly. He even made me this 10-minute physical routine everyday. I was curious with the meds and what each does, because I also had meds from my OB then and some diet supplements, though assured me it won't complicate things. I searched it myself and discovered that his prescribed Tofranil is just an anti-depressant. No mention of the fact that it's chronic and incurable. Then, I realized it was because he never really talk about Narcolepsy. He would just give tips me on getting a good night sleep like turning cellphone off to avoid the beep sound and the need to check it distraction, or always about losing weight, eating healthy, doing things that makes me happy, worrying less, and so on. I never heard him say cataplexy or narcolepsy or sleep paralysis and all that sort and he thought I was just a little kid. I like how he was like a father to me, but I felt my condition remained unrecognized or invalidated even if I was already with a doctor.
Now more than 4 years without medical attention, my therapy is part-time talking about it and full-time writing about it. Pardon my very long long write-ups. I’d rather spend my ample time here than Facebook. The online community of PWN’s has been my new BFF. Blogging here, reading there, tweeting here and there, chatting with PWN’s, and best of all, knowing and communicating constantly with blogger, runner, spokesperson, author, advocate Julie Flygare!
