Index Support Center Forums Treating Narcolepsy Finding a new doctor

  • This topic has 9 replies, 6 voices, and was last updated 1 month, 2 weeks ago by ThsonBlkg. This post has been viewed 944 times
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  • #8782
    AvatarSascha
    Participant

    Hi, I’m new to the forum and having issues with my neurologist. He’s not listening to me and it’s obvious he doesn’t trust me. How do I find a new doctor that won’t be like this? His reviews online are good so I’m worried to go by online reviews.

    #8784
    FerretFerret
    Moderator

    Tell people where you are located and they will try and help you. It’s a big world.

    #8786
    AvatarSascha
    Participant

    Cincinnati, OH

    #8793
    AvatarNatdoc
    Participant

    513 475 8730
    Dr. J. Molano
    Univ of Cincinnati

    #8806
    AvatarSascha
    Participant

    Thank you, Natdoc! I’ll call on Monday.

    #8828
    EnginerdEnginerd
    Participant

    I used the process of elimination: going from doctor to doctor until I found one with whom I felt comfortable. It took some time, but it was worth it. That was based upon advice from a different specialist; she told me if I felt something wasn’t right with my health, to pursue it until I found a doctor who believed me (…and then my fatigue was eventually diagnosed as narcolepsy).

    #9147
    WV_narcolepticWV_narcoleptic
    Participant

    Narcolepsy is a rare condition and it’s hard to find an experienced doctor. Worse yet, there aren’t many that treat it to begin with. I have seen neurologists, pulnonologists and specialists in sleep medicine.
    What I did when I fired my last doc was call SDS Pharmacy which I don’t think does anything but distribute the Super Def Con I controlled substance Xyrem. I asked them if they could tell me which doctors in my area prescribed Xyrem. It was a last resort for me, I hadn’t had any luck finding docs on my own.
    To my surprise, they read me off a list of docs. I noticed my doctor was not on that list. I asked why. She said she was only naming docs who had more than 7 patients on Xyrem. I asked how many patients on Xyrem my doc had. He only had one – it was me.
    Now I am seeing a sleep specialist with better results.

    #9149
    WV_narcolepticWV_narcoleptic
    Participant

    Duplicate post deleted

    #24863
    LilimaydinLilimaydin
    Participant

    I agree that it is very difficult to find a good doctor who would specialize in the treatment of this disease. Most doctors give the wrong treatment, which only worsens the state of health. I think you’ll have to change a lot of doctors until you find the right one. My niece is ill and I advised her to keep in touch with the nurse at all times. As far as I know, she uses an online medical card in https://www.iinsight.biz/ software that allows her to make an appointment with a doctor if necessary and ask her questions to the doctor. Tell me, have you called all the clinics in your city?

    #24866
    FerretFerret
    Moderator

    Yes it is. But if you don’t tell people where you’re located then nobody can help you.

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