May 2, 2011

Who has POTS?

One of my online POTS friends, Annie Morales, is compiling a list of people who have been diagnosed with POTS.  I want to help her add to that list, so if you are willing, please post the following.  If you want to be included anonymously on the list - then just use your initials or something.

Name:
Current Age:
Location:
Age at onset of POTS like symptoms:
Age at time of diagnosis:
Were you misdiagnosed with something else before you were diagnosed with POTS?:
Anything else you want to tell us?:

THANKS!

7 comments:

  1. Name: Lauren Stiles a/k/a POTS Grrl
    Current Age: 32
    Location: East Moriches, NY
    Age at onset of POTS like symptoms: 31
    Age at time of diagnosis: 31

    Were you misdiagnosed with something else before you were diagnosed with POTS?: YES (neuroendocrine cancer/carcinoid, addison's disease, "it must be your thyroid", "it's all in your head", "you must be depressed," croup, "it's just asthma" - all wrong and so frustrating!)

    Anything else you want to tell us?: Check out my blog: www.potsgrrl.blogspot.com

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  2. Name- Private
    Current- 29
    Location- Queensland, Australia
    Age at onset of POTS like symptoms- 17
    Age at time of diagnosis-19

    Misdiagnosed? Anxiety/depression Drs kept saying from 2004 on your just a stressed single mother go home and rest. I would show up with heart rates of 190 and incredible sick they'd always blame it on anxiety or stress I knew it wasnt either. They sent me to a psychologist in 2010 as it must be "all in my head". Finally got the diagnosis in Aug 2010 after ending up very sick in hospital.

    ReplyDelete
  3. Name: Miranda
    Age: 15
    Location: Maryland
    Age at onset of POTS like symptoms: 10
    Age at time of diagnosis: 14

    I wasn't misdiagnosed, but I told my doctor about my pre syncope and she just told me it was my asthma. I finally got her attention when my hr went to 220 while walking.

    My blog is http://mirandaspotsieworld.blogspot.com/
    feel free to ask me any questions. :)

    ReplyDelete
  4. Name: Sarah Mae
    Current Age: 25
    Location: South Dakota
    Age at onset of POTS like symptoms: 24
    Age at time of diagnosis: 24
    Were you misdiagnosed with something else before you were diagnosed with POTS?: I wasn't misdiagnosed. In fact, I was diagnosed but not informed by my doctor. They wrote it in my medical records but didn't tell me I had POTS because they claim I was "asymptomatic". A few weeks later my legs started turning dark purple (blood pooling) and none of my local doctors could find out what was wrong. It wasn't until months later when I was looking back at my records from Mayo Clinic that I found I had POTS.

    ReplyDelete
  5. Name: Miss Nikki Ann
    Age: 35
    Location: Connecticut, USA
    Age at onset of POTS like symptoms: 28
    Age at time of diagnosis: 34

    I was never misdiagnosed.

    I've had heart issues since birth, so I've always had a Cardiologist. It's just that no one could quite figure me out. And as I got older, I got worse.

    My Gastroenterologist gave me the official diagnosis in December 2009. I had been very ill since March 2004.

    Blog: www.missnikkiann.blogspot.com

    Youtube: http://www.youtube.com/user/missnikkiann

    ReplyDelete
  6. Name: Kyla
    Age: 16
    Location: Northern, VA
    Age at onset of POTS symptoms: 15
    Age at time of diagnosis: 16

    I was diagnosed with chronic EBV, neurally mediated syncope, CFS, anemia and Lymes. I do have chronic EBV and did have Lymes but with IV antibiotics and super strong antivirals I got rid of lymes and got my viral count too low to produce such drastic symptoms.

    ReplyDelete
  7. Name: Lori Rice
    Age: 25
    Location: Pittsburgh, PA
    Age at onset: 16
    Age at diagnosis: 25
    Misdiagnosed with: anxiety, depression and vasovagel syncope

    I was finally diagnosed with POTS in June 2012 after 48 hours with a holter monitor, a stress echo test and a tilt table test. I am hoping to get real answers when I see my EP on 8/9. If I don't feel he is doing enough then I am going to call the Cleveland Clinic and make an appointment.

    ReplyDelete