Because GT has been such a wonderful, caring, understanding community to me throughout the past couple years of health craziness, I want to share that I have FINALLY received a diagnosis - not necessarily one that encapsulates everything I have going on, and I could have told the doctors I’ve had this since I started passing out at age 8 without paying $425 out of pocket for a test that my insurance doesn’t believe to be medically necessary under any circumstances, but at least I am now, officially, somewhat validated.
The problem remaining is “if I’ve had this since childhood (and I definitely have,) did it get worse suddenly or do I have something else going on too?” And also the fact that it’s really hard to treat. But you know, it’s something. The fact that 25% of people with this condition are completely disabled makes me feel better too because crap, keeping at life in any kind of capacity is really freaking hard these days, and no one else can see it.
Next thing is trying meds, although my neuro wasn’t optimistic about them working, cardiac rehabilitation (kinda like special PT to build cardiac endurance when you have a condition that causes exercise intolerance making that really difficult,) and seeing another endocrinologist to see if my elevated cortisol levels might be a contributing problem too.
Everyone else out there going through the torturous trials of diagnosis and treatment for mystery bullshit, I love you, I hear you, and I’m here for you <3