Monday, March 30, 2009

Miracle Flakes of HAPPY DIAGNOSIS TO ME!!!!!

That's what I would name my cereal.

AHH! Definitive diagnosis!!! Six months of trying to sort this out, and at long last! Proof we're not crazy!!

Today I was formally, officially, once-and-for-all *diagnosed!* with a condition called POTS -- (Postural Orthostatic Tachycardia Syndrome). Whenever I stand up, it's like a healthy person running in place. My resting (lying down) heart rate lies between 85-115 beats per minute, while yours is probably around 60. When I remain standing for as little as 3 minutes, my heart rate jumps to 120-155 bpm...way too high! Luckily my blood pressure (after lots of testing) averages out to be relatively stable, which is why I haven't fainted as often as other POTS patients, making my diagnosis even more elusive.

To learn more about POTS, please visit some of the sites and videos I've posted on the the right-hand column. I'm sure I'll be writing more about my personal experiences in the future.

For right now, my mom and I are, somewhat ashamedly, super ecstatic to have this huge burden (of finding a diagnosis) lifted off our shoulders. It's truly been an uphill climb, dealing with so many doctors who accuse us both of being hypochondriacs, and the fact that POTS has only been identified in the last 15 years. Most doctors don't know anything about it.

>>Final Report: Autonomic Reflex Screen
"Conclusion of 3/27/09 Tilt Table Test"
Clinical problem: Autonomic disorder, fatigue, tachycardia

Abnormal study. There was *significant orthostatic tachycardia* on tilt-up as can be seen in POTS, deconditioning/dehydration, anxiety, and other hyperadrenergic states.

Heart rate increment was *excessive!!* and patient developed weakness, trembling, dizziness, crying toward end of head-up tilt. (Note from me: and this was only 10 minutes. The one at our local hospital was 40 minutes! It's incomprehensible that that one was pronounced "normal.")

Breathing test, normal. Sweat test, reduced in the forearm, normal everywhere else.

  • Supine, 94 bpm, 118/64
  • 1 minute standing, 120 bpm, 110/82
  • 5 min, 136 bpm, 100/70
  • 10 min, 136 bpm, 104/72


Anyway, HALLELUJAH! The search is over! We're doing some more tests tomorrow: blood work, thermo-something-sweat test (will help determine how to approach exercise), ultrasound of my abdomen, and a couple more consultations...including one with our go-to guy. Looking forward to getting home certainly by Wednesday and treating this diagnosis (yippee!) full-time.

Praiseeeee God!!!!!

emma :D


  1. Praise God. I am so happy that you have officially been diagnosed and can now start treatment and get on the road to feeling better. This is great news.

  2. I am so happy that you can now focus on treatment rather than diagnosis! Phew!

    I miss you greatly and you pray for your daily!


  3. Yeah! You have a name to what you have, although it's what you thought, it is awesome you now can say it definitively and without question documented from Mayo and actual doctors. You know what you are dealing with! Its survivable! I rejoice with you!

  4. I'm soooo glad you know what it is! Now we just have to find a way to get you on your feet again. (you know what I mean.) :) Congrads!

  5. We are so happy for you! I know it has been frustrating, to say the least, trying to convince idiot doctors that there is something real going on with you. Thank God for the doctors at Mayo. Randy's MS doctor practiced at Mayo for quite some time, so we are very partial to those doctors. Thanks for giving us the update so quickly.

  6. Thank you sweet Jesus. Emma, I'm very happy for you. God is so good.

  7. Thank God!!I know how hard this must have been. But now hopefully you can get treatment and get on with living! Yeah to you for making something valuable[this blog]out of the pain.
    You are strong and wonderful!!!!
    Love Aunt JoAnn & all

  8. I'm so thrilled Emma!!! thanks for keeping us all updated in your blog. I know you still have challenges ahead, but it's great to know you're on the right road. Love you!

  9. YAY!!!!!!!!!!!!!!!!!!

    I'm liking this cereal theme. cool beans. oh and i guessed the resses puffs one was MBFGW but it wouldnt let me post my comment

  10. That's terrific!! It is incredible how the contagious the relief of your diagnosis is!

    lots of love,
    JohnMark & Lee

    PS. omg I totally have NI what MBFGW means? My Biggest Favorite Greatest Wheaties? l8r

  11. Yay! Now you can stop waiting around in doctors' offices, and you can stop listening to people who say "it's all in your head" and whatnot. =)

    I'm sure glad you got something out of all those tests; I was worried it would be "negative" on everything.

    It's sad that there's no immediate cure. As we thought, this will take awhile to deal with. But now we have outside proof that you will, eventually, return to perfect health.

    I hope that you can return to school this fall, but if you can't it's still ok. You'll get better eventually; just keep taking care of yourself.

    We'll be here with you, every step of the way. =)

  12. MBFGW=My Big Fat Greek Wedding...I think...

  13. Laura's right -- MBFGW stands for "My Big Fat Greek Wedding" :) my sis and i have it memorized.

    thank you for your comments!

  14. HA! I KNEW there was nothing wrong with your head!
    (Kudos to you and your family for keeping the faith and hanging in there)
    We are sooo happy you have a name for all the symptoms. We will all pray that this goes away very soon. :)

  15. Mrs. Fisher, your comment totally made my day!!

    Thank you everyone for your support :)