i get variations of these every week, so: actual answers. how long until diagnosis: 18 months for me. POTS wasn’t found until month 14 via tilt table. MRI, spinal tap, full metabolic panel before that - all clean.
clean tests don’t mean nothing is wrong, and it took way too long for that to actually land. how do you know it’s not just slow recovery: PEM is the clearest signal i’ve found. if you crash 36-48 hrs after exertion and rest doesn’t fix it, that’s a different pattern than post-viral fatigue running its course. HR spiking 30+ bpm just standing up was my second flag.
i didn’t know to look for that until month 10. when to push for more testing: when ur symptoms don’t fit the available diagnosis. nobody offered me the tilt table. i had to ask for it specifically.
one practical thing that helped: i write a short note after each flare in careclinic - what i was doing before it, what the HR looked like, how long the crash lasted. months of that is a different conversation with ur doc than “i’ve been worse lately.” what’s the one test that actually changed how you understood what was happening?