u/bort_plates

hEDS here. Saw my cardiologist today for a routine checkup. Apparently my aortic root on an echo went from 3.2 to 3.6 in two years. However, my doctor (top guy at Penn), said CT is more reliable for this kind of thing, and it’s been a consistent measurement since 5 or 6 years ago (including a month ago).

I’m trying not to freak out, and we’ll repeat the CT and echo in a year. But has anyone experienced this? Where one kind of test is worrisome but another may be ok?

Took Hadlima for the first time after months of fear over doing so.

Definitely some exhaustion today. Now, almost 24 hours after the injection, getting a decent headache in the front of my head.

Are these to be expected? How long do they last?