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lily.is.in.pain

528d

to anyone who has been diagnosed with PoTS, how long did the diagnosis process take for you? i’ve been having symptoms for about two years, initially went to my gp for headaches, migraines and fainting episodes and was dismissed. i later went back after doing research on PoTS and i’ve been having testing done since then. these tests have been very scattered and very repetitive i.e “we took your bloods and they’re normal! let’s do two more rounds to be sure” or “if nothing changes in two months, come back”. its so frustrating because my symptoms are only getting worse, and i am receiving no support :/

Top reply
    • Belugabear

      528d

      How many doctors have you seen? Have you seen a cardiologist? My gp just took my blood pressure lying down, sitting, and standing and saw the trends followed POTS, so she sent me to a cardiologist who diagnosed me based on symptoms pretty much immediately. If you haven’t gone to any other doctors I’d recommend doing that! Blood tests don’t really help in this case sadly

    • Lyzard

      527d

      It took going to several doctors before one did the poor mans tilt table test which confirmed and then she got me neurologist, cardiologist, and gastroenterologist to help manage my symptoms. It's hard to get anyone to listen! But keep up with it and find a doctor that knows enough about pots to help.

    • NewYork

      528d

      It took about 2 years. I got my diagnosis from a neurologist using the poor man’s tilt table test. Also, it’s normal for your bloodwork to be perfect. That’s what makes it so hard for doctors to find anything wrong with us.

    • Belugabear

      528d

      How many doctors have you seen? Have you seen a cardiologist? My gp just took my blood pressure lying down, sitting, and standing and saw the trends followed POTS, so she sent me to a cardiologist who diagnosed me based on symptoms pretty much immediately. If you haven’t gone to any other doctors I’d recommend doing that! Blood tests don’t really help in this case sadly

      • lily.is.in.pain

        528d

        @Belugabear apparently a referral has been put through, but it’s been months and i have been given no indication of how long the wait time will be. i’m autistic and still living with my parents who are my carers so they are in control of my medical appointments, so it’s difficult for me to have a say in my own treatment. i’m just hoping the wait time isn’t too long

        • Belugabear

          528d

          @lily.is.in.pain I hope you get in soon! Are you able to get the number of the cardiologist’s office and confirm the referral went through? I don’t trust doctors when they say they sent a referral, sometimes the system is weird. And usually the receiving office would have called you within a week of receiving it. Maybe your parents would be able to help with some of this too?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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