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Seeking Answers for My Undiagnosed Condition

Allie_is_broken

548d

hello, maybe I'd be better off on Reddit but I thought giving this a shot was worth it. I'm more or less here to figure out what the duck is wrong with me, because apparently the one diagnosis I do have (JHS/joint hyper mobility syndrome) technically hasn't existed since 2017. I was told I didn't qualify for hEDS because my "skin isn't soft enough" my ANA (antinuclear antibody test) came back irregular my rhumetolgist ran a basic test saying there was nothing wrong like rheumatoid arthritis, or lupus. I then saw an infectious disease specialist who confirmed it wasn't due to anything parasitic. I'm more or less looking for people who relate to my experience and may have more answers than myself :)

0

7

7

Joint Stiffness

Arthralgia, Arthropathy

Joint pain

Hypermobility Syndromes

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Top reply
    • KittyRosa

      548d

      That's a high score to not have it. I am working on getting testing myself... The only reason I didn't 100% the symptoms is because I don't have that mobility in my hips, but everywhere else I do and it has slowly gotten more so over the years. I was hanging out with a group of friends and we were testing out and I said "oh I have some extra flexible mobility but I can't touch !y thumb to my arm" and then I did it and was shocked.... I was like oh guess I can hahahaha I have to go in and get the labs done

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    • Allie_is_broken

      548d

      yeah it's just unfortunate there's no blood test for it because each provider can just decide you don't have it if you don't have one out of the 20 symptoms based on their own biases

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      Reply
    • KittyRosa

      548d

      That's a high score to not have it. I am working on getting testing myself... The only reason I didn't 100% the symptoms is because I don't have that mobility in my hips, but everywhere else I do and it has slowly gotten more so over the years. I was hanging out with a group of friends and we were testing out and I said "oh I have some extra flexible mobility but I can't touch !y thumb to my arm" and then I did it and was shocked.... I was like oh guess I can hahahaha I have to go in and get the labs done

      1

      Reply
    • dollipop

      548d

      Well you don't have to have soft skin to have hEDS and whoever told you that doesn't know anything about hEDS. Ask to be evaluated against the Beighton scale and the Diagnostic criteria for hypermobile ehlers danlos syndrome published by the International consortium on ehlers danlos syndromes and related disorders posted on the ehlers Danlos society website. An positive or irregular ANA result doesn't have to indicate another disorder or issue on its own. However mine is irregular most likely due to Hashimoto's which may be something you could look into.

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      • Allie_is_broken

        548d

        @dollipop yeah I had like a 7 or 8 out of 10 on the beighton so she gave me JHS/hyper mobility arthralgia instead. I probably need to see a geneticist and have them re-do an evaluation though. Thank you!

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        • dollipop

          548d

          @Allie_is_broken yeah a 7 or 8 with a history of joint pain is enough to give a diagnosis of hEDS.

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        • Allie_is_broken

          548d

          @Allie_is_broken Out of 9* sorry

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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