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I think they considered pretty much everything before they gave a very tentative preliminary diagnosis and transfered me to a specialist.

I started having symptoms at the seccond semester of 6th grade after a serious week long mystery illness that took at least another week to recover from. I remeber people commenting that I looked "dead" during that time I was recovering. It got really bad by the start of 7th grade and I actually came close to needing to be held back even though it was all excused absences. Thankfully, they didn't count it as an absence if I made it to the school (even if they immediately called my dad to take me home). The medical testing was initially carried out by my pediatricians and their staff. It seamed like I was in that office all the time for tests and exams. They took countless blood samples. I was even on nurse's first time taking blood from a real pediatric PT, oh boy that was a fun time. My mom intervined after like 7 minutes of torture and demanded that someone else take my blood, but I digress.


They eventually stumbled upon POTS while doing research to try to find an answer and decided to see if that was it. They then did a simple test of measuring my vitals lying down, sitting, and standing while leaning against a wall. And then having my stand there for as long as I could or till 15 minutes while measuring my vitals at regular intervals, I don't remember which. They then concluded that I probably had POTS and that it seemed like the best fit, but they they were wholly unqualified in that area. They prescribed me Gatorade and referred me to one of the top pediatric cardiologists in my metropolitan area. He worked in a children's hospital annex that I had been to before for other things (I have also gone to that cities main children's hospital at least once for testing). He did a similar test, but with a few key differences, he had me hooked up to a full EKG, as well as automatic BP cuff, and pulse oximeter. He also would not let me lean on anything or hold onto anything, but had a nurse there to catch me when/if I fell. The test would start out lying down after he had done an exam on me including checking my pulse via the right femoral artery (really wierd and awkward choice and only got more so as I got older...) And I had been then fully hooked up to the machines. I would me asked to try to lie still and they would do a print out of my EKG, then they would have me sit up and do another, then they would have me stand up and do multiple EKGs at regular intervals untill 15 minutes was up or I could no longer stand. This test was repeated every month till I aged out of his care at age 21. He initially prescribed me beta blockers, but that did not work. He then ended up prescribing me florinef, thermotabs (salt tablets), and Gatorade.

That six months of testing before the referral was the worst as my POTS was in full swing and completely uncontolled. It caused intense nausea, severe vomiting, various other gi issues, trouble standing, vertigo, loss of appetite, ect.. Thankfully with management it is manageable, but is at best a daily hinderance and annoyance. I have passed out numerous times from it, but usually I am good at sitting down or lying down before I pass out, including the first time it happened in the second semester of 6th grade. My pediatric cardiologist said that it would get better and go away in my mid to lat twenties, but I am in my early thirties now and it is still very much an issue.

I was going to ask about Endoscopy. ^
I'm glad they've done biopsies too.

I was wondering about Colitis.

I knew someone else who did years of testing for food allergies.
She finally went to a Naturopath who diagnosed Celiac.
That's a gluten thing.

Dairy intolerance is really hard to identify.
My doctor swears I don't have a problem with it.
I've been tested for years.
I can tell you ... I definitely have a problem with it.

It's funny that your experience with dairy is the reverse.
(Doctor says yes, you say no. ^ )

The other thing I'd recommend is called an Iron Panel test.
It tests a lot of different variables with iron and ferritin.
I won't get into all that here, but it could explain your anaemia better.

I think they considered pretty much everything before they gave a very tentative preliminary diagnosis and transfered me to a specialist.

I started having symptoms at the seccond semester of 6th grade after a serious week long mystery illness that took at least another week to recover from. I remeber people commenting that I looked "dead" during that time I was recovering. It got really bad by the start of 7th grade and I actually came close to needing to be held back even though it was all excused absences. Thankfully, they didn't count it as an absence if I made it to the school (even if they immediately called my dad to take me home). The medical testing was initially carried out by my pediatricians and their staff. It seamed like I was in that office all the time for tests and exams. They took countless blood samples. I was even on nurse's first time taking blood from a real pediatric PT, oh boy that was a fun time. My mom intervined after like 7 minutes of torture and demanded that someone else take my blood, but I digress.


They eventually stumbled upon POTS while doing research to try to find an answer and decided to see if that was it. They then did a simple test of measuring my vitals lying down, sitting, and standing while leaning against a wall. And then having my stand there for as long as I could or till 15 minutes while measuring my vitals at regular intervals, I don't remember which. They then concluded that I probably had POTS and that it seemed like the best fit, but they they were wholly unqualified in that area. They prescribed me Gatorade and referred me to one of the top pediatric cardiologists in my metropolitan area. He worked in a children's hospital annex that I had been to before for other things (I have also gone to that cities main children's hospital at least once for testing). He did a similar test, but with a few key differences, he had me hooked up to a full EKG, as well as automatic BP cuff, and pulse oximeter. He also would not let me lean on anything or hold onto anything, but had a nurse there to catch me when/if I fell. The test would start out lying down after he had done an exam on me including checking my pulse via the right femoral artery (really wierd and awkward choice and only got more so as I got older...) And I had been then fully hooked up to the machines. I would me asked to try to lie still and they would do a print out of my EKG, then they would have me sit up and do another, then they would have me stand up and do multiple EKGs at regular intervals untill 15 minutes was up or I could no longer stand. This test was repeated every month till I aged out of his care at age 21. He initially prescribed me beta blockers, but that did not work. He then ended up prescribing me florinef, thermotabs (salt tablets), and Gatorade.

That six months of testing before the referral was the worst as my POTS was in full swing and completely uncontolled. It caused intense nausea, severe vomiting, various other gi issues, trouble standing, vertigo, loss of appetite, ect.. Thankfully with management it is manageable, but is at best a daily hinderance and annoyance. I have passed out numerous times from it, but usually I am good at sitting down or lying down before I pass out, including the first time it happened in the second semester of 6th grade. My pediatric cardiologist said that it would get better and go away in my mid to lat twenties, but I am in my early thirties now and it is still very much an issue.

Oh wow! Thank you for all of that.
I'm sorry but I just saw it now.

That was really interesting and you explained it well.
It's something I'm going to look into even further.

When I asked you about it, I was thinking of my daughter.
She has a lot of medical conditions including "Cyclical Vomiting Syndrome" (ewwww)
She has an autoimmune condition, ASD, and other issues.
I sent her a link to see what she thinks.
She's seeing her Rheumatologist soon so I think it's worth investigating.

After reading your story I'm thinking of myself too.
My adrenal system crashed many years ago.
It started with me fainting and having very low BP (60/40).
I was in hospital a long time.
I had all those tests for orthostatic hypotension as well.
I was sent home on Florinef.

This is all really interesting.
I won't keep rambling but I'm glad to hear you had good medical care.
I hope you continue to improve.

Thank you again and good luck at your new job!