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It’s really random how it happened actually Never Underestimate An Old Man With A Hockey Stick shirt. This ligament in my foot near my little toe kept rolling over out of place all randomly and I was in pain all the time but no one believed me and since my joints would just sublux or I’d end up popping them back in myself everyone just thought I was faking and pill seeking. Then the toe thing started happening really frequently so I googled loose ligament ” and read about hyper mobility syndrome and I’m like of I definitely have that which led me to EDS and I almost started crying cuz I finally found something that connected all my issues, I’m talking every symptom dead on. Set up an appointment with my doctor. Told him about my toe tooling over and that my shoulder kept popping in and out. And he ran me through done things (the beighton scale) and said “oh you have ehlers danlos syndrome” but he wasn’t very knowledgeable in it, but he did send me to a rheumatologist, geneticist and a pain doctor.
Rheumatologist (huge waste of money) the old fart said yes, you definitely have it but there’s nothing I can do to treat it Never Underestimate An Old Man With A Hockey Stick shirt. I’m sorry you have such a painful condition but there’s nothing I can do so you’re SOL”…. 40 bucks to hear an old man tell me I have shitty luck. Geneticist gave me my official diagnosis. (Just saw him again a couple days a go and am super bummed cuz they were going to open a research center there for eds and defunded it cuz they want to focus on children’s disease. [I will go off on a tangent about this so I’ll leave it there]) he also had to rediagnose me since apparently now there are 13 types, with hEDS being the only one they haven’t found the gene for and he said most people don’t pass all the new criteria for clinical diagnosis but he’d check me anyways. I had all of 12/13 and you had to have like at least 9. Sooooooooo ya. There’s my novel. I’m sure when I come back in 6 months there will be new things to go through but I’m waiting to hear back from the genetic testing lab on price and then go from there. Sorry for how long this is, once I get started I can’t stop lol. Hope it’s somewhat helpful.
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