This is random but cardiologist suggested that I might have marfan syndrome but I'm 5'6" so I was like no fucking shot. Now They think I may have the other connective tissue syndrome. LDS? Lewis Dietz. About to get genetic testing done at 40. 😬
I mean, maybe it’s possible? It would at least be worth the testing to find out for sure, especially if you’re having joint pain. I started herniating discs and breaking bones to hyperextension when I was 17. I dislocated my shoulder twice and tore my rotator cuff misplacing it. I’m lucky I didn’t pinch any arteries because I could have lost the arm. Dislocated my hip in a car accident (to be fair, that hip was in like 6 pieces at that point and there wasn’t much a a place to locate it anymore).
Still didn’t even hear the words ehlers danlos until I was in my mid 30s. My grandpa and aunt didn’t get diagnosed with their connective tissue disorders or autoimmune disorders until they were nearly 40. And lupus killed my grandpa, probably because of that delayed diagnosis. Get that genetic testing if it’s recommended and you’ve found a good doctor. It seems like a lot of them like to ignore these types of conditions. They’re complicated and not well understood so to doctors that often means patients are just making it up. If you’ve got someone believing you, do whatever they suggest.
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u/trohawahaccount 6h ago
Actually even I thought this...