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Finding a new doctor for better care

Have you ever had to find a new doctor in order to get better care? What was your experience like? Do you have any advice for others?

  1. How do I find a doctor that knows about narcolepsy. Most of the ones I have treat it like it's not a big deal and make me feel like I'm lazy or dismiss the severity it causes me everyday. I'm so frustrated and can't seem to find a doctor that takes it seriously. Can someone direct me to some resources? I live in the United States the state of Wisconsin.

    1. Hi , I am so sorry to hear that doctors have been giving you the runaround! That definitely sounds very frustrating. Here is an article that you may find helpful: The second paragraph includes a link to find your nearest sleep center. I hope you're able to find the right doctor soon! Best, Allison (Team Member)

  2. I not only have narcolepsy I also have a very rare autoimmune disease. I am 1 of aprox 3000 to 5000 people in the world who have RP. Finding doctors in general is hard, but finding a doctor who will LISTEN to their patients is truly amazing. I was lucky to find a rheumatologist that knows about RP and my sleep doctor is amazing, I even got my regular doctors to listen to me. We know our bodies. We need our doctors to understand this very important fact. You learned from a text book about different diseases...BUT... we are all different! Most people have different side effects or such. We need the doctors to look us in the eye and listen. I am truly thankful for the doctor's I see... I've looked long and hard and it is SOOOOOOO worth it.

    1. Hi , thanks so much for sharing. I'm so glad that you kept searching and finally found a doctor that listens to you! I agree that it is so important to find a doctor that truly listens. Best, Allison (Team Member)

  3. About 3 years ago I sought out a narcolepsy specialist and found one in Berlin, Germany where I was living at the time. It was definitely helpful to find a doctor that actually knew something about narcolepsy (because most doctors do not unfortunately!) I would advise others to do research and try to find a doctor that has knowledge about narcolepsy. You might have to travel but that might really be worth it! Best Wishes, Lauren (Team Member)

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