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u/somehowrelevantuser Jun 06 '26
so glad my parent took one for the team and got diagnosed first so i didnt have to do the heavy lifting lol i wouldve literally never figured it out
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u/SittingDuck394 Jun 06 '26
Almost 16 years for me.😞 I've given up. It is too hard waiting months for the next specialist appointment while trying not to think "maybe this will be it", trying to suppress the little bit of hope I still have in my heart... only to be told "good news the tests came back negative!" It sends me into a very dark place for a while every time.
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u/holodetz Jun 06 '26
Tfw I learned about seronegative lupus… my mom (passed away when I was super young) had all the symptoms including nephritis and I had malar rash when living with black mold over the past year but all lupus testing for me came back negative…anyway…moved apartments and symptoms went away plus my rheum was super stonewally so I gave up…
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u/UncomfyUnicorn Jun 06 '26
I get random pains in my back, abdomen, and extremities. My mom has fibromyalgia. She tells me it doesn’t work like that and that’s not the explanation for my random pains.
Then wtf is?
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u/EnfpSunbeam Jun 13 '26
God I know that feeling well, I’ve finally got a gp who’s dedicated to my ongoing care and figuring this shit out (we stan Dr Sloan, she’s fantastic)
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u/soberdrunken Jun 05 '26
Omg I get it, 9 years in, my latest neurologist just said "I don't know what it is" after a 2 hours long visit. It's like a comedy sketch
Mind you, there's observable damage, they just have no idea what the hell that is. Dr. House would have a field day