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OI/dysautonomia Dr NY/NJ recommendations

Discussion in 'ME/CFS Doctors' started by Pink, Feb 12, 2018 at 2:37 PM.

  1. Pink

    Pink Senior Member

    Tri state area
    I am experiencing a lot more dizziness, feeling sick to my stomach and head after any kind of activity, rapid heartbeat even while resting, and my dr and I suspect some kind of OI/POTS/Dysautonomia.

    I contacted Dr Tullo in NJ, but apparently he is only cardiology based. Does an ekg, if it's ok he sends you on. I had an ekg done not long ago, and it was normal.

    My dr gave me the number of NYU's dysautonomia center, & even contacted them for me (after they didn't respond to my messages. you can't talk to anyone, just leave a vm). After a few weeks, they told my dr to send me to a neurologist.
    However, I don't think a standard neurologist has a lot of experience with these issues.

    I checked the dysautonomia websites, but I'd like to hear from you guys if you have any positive/negative experiences, as those sites don't allow reviews.

    Thank you
    echobravo likes this.

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