Fighting for myself

By angiefly2

1 min read

I’ve always had to self-advocate. Even as a young girl. I suppose that it prepared me for what was to come. Getting a diagnosis. Most doctors have scoffed at the idea that I am narcoleptic with cataplexy. Diagnosing me with everything but narcolepsy. Until I finally had enough.

Nobody can advocate for you, better than you! I refused to give up and made an appointment with my family doctor. I made a list of symptoms and questions. Unfortunately, the doctor didn’t really care about my concerns. He actually laughed at me when I suggested narcolepsy. I got the uneducated “you’re too young” and a laugh. I simply asked for a referral to a sleep specialist and was given one. Thank goodness for self-advocating! The sleep specialist was wonderful and educated. I am now diagnosed with narcolepsy with cataplexy.

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MarkDFW Member
I CANNOT STRESS THIS ENOUGH. If you have a sleep disorder of ANY kind, make an appointment with a NARCOLEPSY SPECIALIST. It is true that there are not many out out there. What is ALSO true is that there are a bazillion "sleep disorder" doctors out there., MOST "sleep disorder" doctors do not deal with Narcolepsy. A Narcolepsy Specialist however, is familiar with all of the other sleep disorders. What this means is that, like MANY people on this site, the majority of people have to struggle over time to get a Narcolepsy diagnosis. It's no surprise that "sleep disorder" doctors not specifically knowledgeable with narcolepsy, will avoid making a diagnosis of what is likely to be THE most serious sleep disorder a person can have. There are LOTS of people who have struggled with just GETTING a diagnosis. They ALL have the same issue in common. They did not go to a doctor unafraid of, and capable of, making a diagnosis. I suspected that I had a very serious sleep disorder shortly after I started college, years ago. I knew I had a problem, and chose to deal with it through will power. I have N2. With N1, it be more difficult to manage, even so, I would NOT however recommend this course of action. My narcolepsy became more difficult for me, the older I got, until I finally admitted I could use some help., I HAVE a Narcolepsy Specialist nearby, and made an appointment. After talking with my doctor for a short time, he told me that he thought it was highly likely, that I had narcolepsy just based on my answers to his questions. He said however, these days, doctors have to deal with Insurance companies, so we have to do the tests that they require before they will pay for any treatment. He said that he was required to do that and so he would adhere to their guidelines, HOWEVER, HE is the narcolepsy Specialist. If the Insurance company wants to hear from an expert regarding Narcolepsy, they have his number. Who else can they call ? If they don't like a diagnosis of Narcolepsy, too bad. He doesn't like it, the patient doesn't like it, and the insurance company doesn't like it. The tests indicated Narcolepsy. Everyone is now on the same page, so now we get back to the heart of the issue - treating the patient. We tried a few medications and found one that worked about as good as they can. He said they don't like to prescribe that one very much. Too bad. If they have questions, they can call him. His comment to me was that nowadays, it is important that your doctor is also good at dealing with insurance companies. He is a VERY bright and courteous guy that works well with them. There is also no question or arguments about who is the doctor, expert, and diagnostician, with the ultimate responsibility. A GREAT deal of time and money is wasted not going to a doctor like this. Too far to drive ? Nope, not in the long run. Just read all the horror stories from people going to "sleep disorder" doctors for years., 
1. Allison Echols Community Admin
 <inline-mention username="MarkDFW" user-id="4201103"/> thanks so much for sharing this advice! I'm glad to hear that you were able to find such a helpful Narcolepsy Specialist. Best, Allison (Team Member)
Iris Vasconcelos Moderator & Contributor
Hi <inline-mention user-id="4121124" username="angiefly2"/> ! That is so amazing! Unfortunately, that is our sad reality most of the time. We have to fight for what we know our body is telling us because only we know what we feel right? I also went through the process of "self-diagnosis" and went to a doctor just to get a confirmation for something I already knew. That's why we need to share our stories also, so that we can advocate for those who may have a harder time advocating for themselves. Best wishes!
Keeley Lange Member
I am so happy you shared your story. I had to advocate for myself too. It saddens me that we have to fight so hard. I only hope our stories can some how be used to help others.