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Just diagnosed with UCTD, feeling lost and alone

optimistic

730d

anyone out there that has UCTD? l was just diagnosed with the disease in February of 2021, Dr's are still studying it. They say it's rare but it seems as though l'm the only who has it! HELP!

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9

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Diffuse connective tissue disease

Rheumatoid Arthritis (RA)

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    • PhoenixAsh

      688d

      I've been diagnosed with UCTD since 2014! I've never met someone else with the same diagnosis so I'm glad I'm not alone dealing with it

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    • PhoenixAsh

      688d

      I've been diagnosed with UCTD since 2014! I've never met someone else with the same diagnosis so I'm glad I'm not alone dealing with it

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      Reply
    • ShenNinja

      729d

      I was diagnosed with others as well as the main UCTD. I was told UCTD is different than MCTD but I truthfully am not sure. My body aches all over daily and continuous. Some days more than others.

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    • KJWolf

      730d

      Also: original diagnoses was SLE Lupus.

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    • KJWolf

      730d

      My family member was diagnosed with UCTD. I have MCTD.

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      Reply
    • TrixNY

      730d

      I have been under the care of a rheumatologist since 2016, too. I have been diagnosed with UCTD (I’ve also heard it called MCTD), and I possibly also have SLE, but that is typically harder to diagnose. To be honest, I think there are at least half a dozen different new, unnamed autoimmune diseases that are just getting ‘lumped’ into UCTD. They can’t call it fibromyalgia, because there are clear lab indicators of inflammation and bone/joint/organ problems, but they really don’t know what to call it or how to treat it. I have all the indicators of SLE, except the butterfly rash, therefore I have UCTD. 🤷‍♀️

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      • NickGobes75

        689d

        @TrixNY UCTD and MCTD are two different diseases. MCTD is a specific overlap disease of lupus, myositis, scleroderma, plus RA and Sjögren’s. I might’ve missed one in there. UCTD is when you have symptoms but they do not fit any diagnosable criteria of the already named connective tissue disorders (RA, Lupus, etc). If that makes sense.

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        • TrixNY

          689d

          @NickGobes75 I appreciate that’s the official name of these diagnoses, however, I think overall the rheumatoid community understands about 1% of what autoimmune disease is- hence all this overlap and almost-the-same-but-not-quite-the-same forms of disease. I had UCTD and it gradually progressed to SLE, and now we’ve added in MCTD, but I think in 5 years they’ll have 5 new ways of calling the same symptoms I’ve had for 10 years.

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    • ShenNinja

      730d

      I have UCTD I was diagnosed in May 2016

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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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