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.

Haaaai :)

I'm Emmeryn, but y'all can call me Emmy. I'll write a proper introduction when I have a better sense of the voice I wanna use for this blog, but for now I have something to talk about.

Background: what did we already know

I'm transfeminine, and currently on hormone replacement therapy. The fundamental purpose of today's visit was to make sure my HRT was going well. In my last appointment, I had switched from oral to transdermal estradiol.

I also have some weird longstanding symptoms. I'd been told my entire life that they are either normal, or not worth looking too far into, but since recently gaining independence from my abusive parents (whose effects on me will likely be the repeated topic of discussion here), I've realized that it's probably worth figuring out what's going on. Specifically:

• Most of my joints get subluxed (misaligned) and irritated really easily, either doing routine tasks or for no apparent reason.
• Standing around for too long hurts. (It's also exhausting, due to the next item on the list.)
• My heartrate goes from about 70 lying down to about 120 standing, which turns out to be a very effective way to waste energy that I'd much rather use ... just living my life.
• My hand strength is a joke. Packages routinely require tools to open (most recently, a bottle of MTN Dew that required pliers), and I get painfully tired after not even a page of writing.

I already had a hypothesis for exactly what it is, but I decided to let my doctor come to his own conclusions.

Getting there

Getting there was a simple matter of a couple buses – thankfully, my city has quality mass transit. Nothing remarkable happened.

Outcome

We discussed my most recent labs, which were weird but not imminently alarming. Our conclusion was that we need more data, and we can safely wait until my next labs (likely in about 3 months).

We also discussed the list above. My primary care doctor and I both suspect a genetic connective tissue disorder called Ehlers-Danlos syndrome (we came to the same conclusion independently), and now I have a rheumatology referral to hopefully get a proper diagnosis. I'm surprised that getting on the same page was this easy, but hey, something in my life finally went right, so I'll take it. At the very least, I finally have actual validation that my symptoms aren't normal.

Hopefully I'll have something more optimistic to talk about sometime soon.

Later!

-Emmy