Tuesday, July 7, 2015

The long road to a diagnosis!

Hey everyone!  My first post is going to be about my experience with getting diagnosed with POTS.
http://www.medicinenet.com/pot_syndrome/article.htm

First of all, when I was 11 years old I was diagnosed with Mononucleosis and took 3 weeks off of school! Luckily it was only 6th grade, nothing to drastic.  That diagnosis changed my life forever.  Ever since I got mono I have been fatigued, tired, exhausted, and suffered from headaches.  9 years later I was diagnosed with POTS.

Let's back up a few years though.  After coming to college in 2013 I started getting excruciating stomach pain with headaches and fatigue. I visited a GI doctor and got a full work up. When I say full I mean it. Everything came back normal (POTS patients know what that's like). I then had a laparoscopic surgery and was diagnosed with endometriosis! I was so happy to have a diagnosis that would cure all my stomach pain in just a short 6 months of hormone therapy.

Unfortunately, that was not the full reason for the pain I was having. I then went to a different GI doctor and got a lovely FULL workup again (colonoscopy, endoscopy, etc...). Everything once again came back normal. The GI doctor referred me to the Mayo Clinic in Arizona. It was so nerve racking to be at such a prestigious medical facility.  Quickly after being at the Mayo Clinic I was no longer nervous. Everyone I encountered there was amazing and nice.  I once again did even more GI work up at the mayo clinic. I won't go into details because they aren't very nice words :)  No diagnoses came out of that week long of testing except Gastroparesis (a symptom of POTS) but I had another appointment down there a month later, an autonomic reflex test.

The autonomic reflex test consisted of a sweat test, breathing tests, and a tilt table test.  Like most POTS patients, I lost consciousness during the tilt table test from my blood pressure dropping too low and my heart rate being too high. That was one of the scariest moments of my life, I have never really passed out from standing before. Dizziness when standing was my middle name but never passing out.  5 days after passing out I was diagnosed with POT syndrome which has been the beginning of a very long road. I was then referred to a neurologist and am waiting for the appointment! Here comes a long road of optimistic treatment....



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