0xEmmy.me

So, I just got back from the rheumatologist. Here's how things went:

Some exams, some questions.

So, I show up (having walked the kilometer-or-so from home), and the nurse takes my vitals. Off the bat, my heart rate is at 130. By my standards, that's ... whatever, but judging from how the nurse reacted that must somehow not be normal? IDK. Nothing else got anyone's attention.

Then I see the doctor. He immediately examines my joints – most of them are hypermobile – no surprise there. Then he asks me about my family and personal history – the pneumothorax of 2017, my heartrate weirdness, all of it. He inspects my skin, noting that it's significantly stretchier than human standard. He inspects my eyes – nothing there.

Ehlers-Danlos Syndrome (?)

The rheumatologist comes to the conclusion that I do in fact most likely have EDS, though he is hesitant to make an outright diagnosis. He even has his supervisor check his work – nothing changes.

He tells me that my current official diagnosis is “hypermobility syndrome” – which, since 2017, isn't even a thing. But the computer system my medical offices use, says EDS. So I don't know what to believe.

The case of the multiplying referrals

He generates two referrals. He refers me to genetics, to determine if I have a known mutation that would be consistent with EDS, and to help pin down what type I have. He thinks it's most likely classical EDS, which ... I'll get into the types more in-depth when I get a proper, final diagnosis.

He also refers me to cardiology for an echocardiogram, which seems sensible – I'm pretty sure my heartrate issues are dysautonomia (a neurological problem), but I guess it's worth ruling anything else out first. If I do actually have EDS, it's probably worth watching anyways.

So now I have two more phone calls to make... on top of the optometry and dentistry visits that I am well overdue for. And the trip to the DMV to update my state ID with my new name. And my academics.

So I'm gonna be busy the next few weeks.