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Still No Set Diagnosis

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I've been struggling for over 4 years now, it started with intense urinary pain, more than a UTI but I never actually had a UTI. Proteins in my bladder and clumps of white blood cells but no infection. I had an unsuspected 4-day hospital stay in October following a cystoscopy that came out completely normal. My urology issues have been a huge mystery for many years. I've seen two pediatric urologists in the past year (I'm 16) but never got answers or relief. My last urologist found I was very constipated and referred me to a pediatric GI who has diagnosed me with IBS (Irritable Bowel Syndrome), gastroparesis, gastritis, GERD (Gastroesophageal Reflux Disease) I'm unsure whether some of these fit together or not. They share many of the same symptoms so it can be confusing. She also "diagnosed" me with AMPS (Amplified Muscoskeletal Pain Syndrome) although I have yet to see a rhemotologist. My wonderful GI was also the first to mention POTS. When I looked it up it was amazing, I finally had an answer that made sense. I knew I had POTS.

My mom was also certain. We were so anxious to get a diagnosis that we drove to my aunts to use her BP/Heart Rate monitor to do an at-home test. Sure enough my HR rose by 30 beats within 10 minutes but I fainted after 7 minutes (HR got to 118 BP was 82/68) I started (laying down) at 107/79 with a HR of 63. That was the first time I fainted and within a week I fainted twice after that. 

I've had some pretty concerning readings. I'll list some: (135/79 122bpm standing) (88/61 126bpm standing) (99/76 133bpm standing) (159/85 125bpm standing) (114/90 130bpm standing) (103/81 142bpm standing) but everytime the doctors do it (it's been 3 times now it's "normal" or at least not concerning) I'm so frustrated! It's hindering my diagnosis because the doctors can't see what happens. I show them pictures of the readings but I know they still need to see it. I read about masked hypertension but I feel like the doctor won't take that seriously. 

I'm practically disabled and I'm 16. I don't know what to do! I am sure I have POTS but I need my doctors to be sure too. I'm very frustrated. It's been so many years and it has completely ruined my high school days. I need answers. I have every symptom of POTS possible! I want to be able to get out of bed and enjoy life.  

I saw a cardiologist today. I had a heart sonogram done, and EKG and the orthostatic test (normal I think?) I had a fistula. The Dr. said it was normal, 5% of people had it but not concerning and a little "extra communication" but other than that I was fine. I have an appointment with a POTS specialist on July 10th where a tilt-table test will be done. 

Please if anyone has any advice it would be so greatly appreciated. 

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Whatever you do-don't give up!  You are on the right track with the tilt table study --it will tell them a lot about what is happening with your receptors, etc.  You are a lot like many of us who have struggled with an explanation for our symptoms for years--the good thing is the symptoms are treatable !  hang in there--help is coming!  

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Tilt table is the right track. My 14 y.o. son's heart rate and blood pressure do the same weirdness. No fainting spells though. He functions as long as he takes it easy. Ask about a holter moniter as well. That way you can show your heart rate fluctuations. Don't give up. It will be a long journey but it will be worth it when you find your answers. Fingers crossed that it is just the growing version. Something like 80% of kids grow out of it by the mid-20s. I wear a garmin vivosmart HR so that I can watch my heart rate easily and tell myself "you can push through it" or "go lay down before you hurt hourself." It is very comforting.

Have you had all of the tests to confirm you gi diagnoses or are they guessing based on symptoms?

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