Index Support Center Forums Diagnosis Process Neurologist Recommendations Based on Location

  • This topic has 9 replies, 5 voices, and was last updated 3 years, 1 month ago by Sleepy RBD. This post has been viewed 542 times
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  • #2655
    AvatarHaven
    Participant

    I learned today that a friend’s son is showing signs of narcolepsy. I’m trying to point them in the right direction as far as online resources and have encouraged them to set up a MSLT. If it is N, they will want a good doc that is closest to them. For many of us, finding a good doctor was difficult, yet made a world of difference.
    Would there be any reason why we couldn’t have a thread here recommending doctors according to geographic location?

    My friend lives in western NY. If anyone can recommend a good neuro within 1 to 1 & 1/2 hours, it would be a great help.
    Thanks so much!

    #2662
    AvatarSleepy RBD
    Participant

    I am sorry to hear about your friend’s son and wish that I knew of a doctor to recommend. It would be helpful if such a list existed or maybe through networking, someone will see this and PM you with a suggestion.

    Do you mind sharing the signs that are of concern to your friend?

    I hope that your friends will be successful in finding the right doctor.

    #2667
    JasonJason
    Keymaster

    I don’t see any issues making a thread on doctor recommendations. I think it’s a great idea. Maybe down the road we can make a review system.

    #2689
    AvatarHaven
    Participant

    @SleepyRBD… Her son has eds that they noticed this summer…coming into a meeting and nodding off within five minutes. He has also kept a journal for about a year of nights that he has what he calls lucid dreams right as he is falling asleep.

    My friend thought it could be apnea, which it could be. The dreaming that she described right as he is falling asleep sounds a lot like what I experience as hypnogogic hallucinations.

    No cataplexy that he has noticed.

    My heart hurts for him. I was in high school when N hit, but I wasn’t diagnosed until I was 25. Trying to get through college and succeed in my first job out of school was insane. That’s why I advised her to get the sleep study done. No matter what the issue is, the sooner they find out, the sooner life can (hopefully) become more normal.

    Thanks for asking!

    #2691
    TheRabbitKingTheRabbitKing
    Keymaster

    I wouldn’t be gloom and doom yet. Since there’s no cataplexy, there are a host of more likely reasons for the EDS. It’s worth following up on of course, but hopefully it’s one of the more common/treatable causes of hypersomnia. As far as neuros go, my guy is one of the best in the country, but nowhere near New York 🙁

    My current jam: Anathema - Springfield

    #2692
    FerretFerret
    Moderator

    As far as neuros go, my guy is one of the best in the country, but nowhere near New York

    Then please start the thread of “highly recommended Doctors” and put your guys name on the list and his city and state location.

    #2694
    TheRabbitKingTheRabbitKing
    Keymaster

    I’m going to be coy here for reasons of informational security and say only that he is in northern Alabama and that anyone is free to PM me, if they want his info. A word to the wise when discussing things like this, be careful not give too much identifying information. You never know how it might come back to bite you.

    My current jam: Anathema - Springfield

    #2699
    FerretFerret
    Moderator

    Okay then. If anyone wants to pm me with the name of a Doctor, City, State (or Province) that you feel has gone beyond your expectations and is deserving (in a good way) to be on the list. I will post a thread when I get to five.
    The information will then come from me…. and I’ve lived in Mexico for 21 years and don’t have a Doctor of any kind in any country. Then, who or whatever comes to bite me in the ass will be really sorry they tried. 😉

    #2700
    TheRabbitKingTheRabbitKing
    Keymaster

    That’s a good idea.

    My current jam: Anathema - Springfield

    #2764
    AvatarSleepy RBD
    Participant

    @Haven…Thank you for sharing the information. Your friends are fortunate to have your knowledge and experience to encourage and support them as they look for answers.

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