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!
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!
Name: Lauren Stiles a/k/a POTS Grrl
ReplyDeleteCurrent 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
Name- Private
ReplyDeleteCurrent- 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.
Name: Miranda
ReplyDeleteAge: 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. :)
Name: Sarah Mae
ReplyDeleteCurrent 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.
Name: Miss Nikki Ann
ReplyDeleteAge: 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
Name: Kyla
ReplyDeleteAge: 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.
Name: Lori Rice
ReplyDeleteAge: 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.