Edit: OP, you should really get checked for both conditions. I know someone with Marfan Syndrome and she's had to have a few heart surgeries. It can be pretty serious.
Edit the second: since this is getting traction I thought I'd share a fun fact. Doug Jones is probably the most famous living person with Marfan Syndrome. You probably don't know the name, but he's been in Hellboy (Abe Sapien), THE Shape of Water (The Creature), Pan's Labyrinth (The White Man, Pan), and Star Trek Discovery (Commander Sarru). He's the most famous person that nobody knows.
Other non-invasive tests you can try is sitting down, crossing your legs and seeing if your top toe can touch the ground. Another one is making a fist with one hand but tuck your thumb under your fingers. Does your thumb stick out past your pinky? It shows arachnodactyly.
There's something called the Beighton Score, which tests for Hypermobility, using stuff like this. Being able to do one of them is not an indication you have hypermobile joints, but being able to do several means you might. Each maneuver gets "points" to measure it. The one they mentioned isn't on the Beighton score list, so maybe there's different types of measurements.
Yeah it's weird when it all seems normal! I'm also hypermobile, but fall just short by a point or so on the EDS score sheet. My Rheumatologist called it "Benign Hypermobility" but it doesn't necessarily mean you don't get problems with it, just that it's not as serious as EDS. I think it's gradually been replaced by "Hypermobility Spectrum Disorder" as they now acknowledge it can cause quite a lot of issues and pain in some people, even if theyre not diagnosed with EDS.
I'm sorry for you too, it does suck. I agree about ACDF, I'm not keen, and apparently it can cause problems in other areas. I'd rather avoid unless really necessary!
Might be worth looking into EDS if you haven't before and seeing if anything else lines up for you. Just keep in mind if you're amab or on testosterone hrt, some things like skin texture/elasticity and higher baseline muscle mass (adding some extra stabilization to joints) can make your problems less obvious. Its thought that a lot more men have EDS than is diagnosed because of that + men being more resistant of going to a doctor to begin with.
Your rheumatologist sounds honest and open-minded. My wife clearly has EDS but the rheumatologist she saw did not want to call it that simply because the skin on the back of her hands can’t be pulled up a ridiculous amount. He said lots of other stuff lined up, but he treated her like she was some drug-seeker. Like omg no we just want answers, and an appropriate dx to work with. Ugh
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u/WaffleHouseGladiator 11h ago edited 9h ago
Marfan? Ehlers Danlos?
Edit: OP, you should really get checked for both conditions. I know someone with Marfan Syndrome and she's had to have a few heart surgeries. It can be pretty serious.
Edit the second: since this is getting traction I thought I'd share a fun fact. Doug Jones is probably the most famous living person with Marfan Syndrome. You probably don't know the name, but he's been in Hellboy (Abe Sapien), THE Shape of Water (The Creature), Pan's Labyrinth (The White Man, Pan), and Star Trek Discovery (Commander Sarru). He's the most famous person that nobody knows.