shelby23

I don't have any of the major symptoms and a doctor has never mentioned it but thank you

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.

I'm going into my senior year of high school and I've been struggling since the summer going into my freshmen year. It started off with urinary problems and got progressively worse. I've had these symptoms for so long they just became normal for me and they made daily life very difficult. I used to be very active. I took a dance class and a yoga class everyday, I loved it. I loved being active. I really liked school too. Now it's extremely hard for me to be active and go to school. I missed 430 classes last year and almost failed my junior year because all of my absences. I'm missing out on my high school years. Im still not officially diagnosed with pots by a cardiologist, my amazing GI doctor was the one who realized I was struggling with pots. We did a test at home using a heart monitor we had. I layed down for 5 minutes and we checked my pulse. 64. Then we took it every 2 minutes for 10 minutes. It continued to rise until I fainted after 7 minutes of standing. I can't say how thankful I am to finally have answers. It means so much to be able to connect with people who go through the same things I do. Im writing this post because as much as she tries to my mom doesn't understand. I don't expect her to because you truly don't know the struggle until you've lived it but it makes me sad because she gets frustrated with me. My mom thinks I'm not doing anything to help myself. Not eating salt. Not eating or drinking water and not exercising. All things that are very hard for me to do. I'm trying but I'm very frustrated and hopeless myself. I've tried so many things and nothing works. She's also frustrated because school is such a challenge. Right now I'm doing virtual school over the summer but I'm having a flare and haven't made any progress for quite some time. The dizziness and headaches make even thinking about school impossible. I have also been diagnosed with AMPS (amplified muscoskelatal pain syndrome) IBS (irritable bowel syndrome) early satiety (making my stomach unable to stretch so I get full very fast and get nausea and tremors after eating) and gastritis. Everything together just makes life overall misery. I just wish my family and friends could understand how hard I'm trying.