I've been 10 yrs plus trying to get help. Finally yesterday my doctors had those aha moments when it came together for them. Behcets with lupus/ connective tissue disease as a differential. Does lupus and Behcets have a lot in common or why am I now noticing so many have both. Is this a thing?
Diagnosis finally.: I've been 10 yrs... - Partners for Behc...
Diagnosis finally.
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TurtleWings
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I know this is an old post...but I hear a lot that Behcet's is the likely first autoimmune disorder to show up. I started with Behcet's undiagnosed in my teens. Managed flares OK, but it was my dentist that told me to get checked out. We did an oral biopsy to confirm that it is Behcet's related. I too have connective tissue disorder and Lupus was a ddx. I have something called Relapsing Polychondritis. The combo of the two diseases is called MAGIC syndrome. RP came after a terrible COVID infection early on during the pandemic. I get the lupus rash every time I have a flare though. I do think things are often related and my Rheumatologist tries to get me to not put a name on things. He is also a PHD and Immunologist. He is basically saying there are thousands of autoimmune things we don't even know yet. I will say I feel like all of us who are immunocomprised get the short end of the stick. Can't tell how sick we are at times and I get a lot of flack for not being able to do a lot of things! Just wanted to share my experience as well. Hang in there.
Sorry I'm replying with so much time in between. My entire family is plagued with autoimmune disorders. I feel better hearing this because it's been really hard to get them to put a name on it. But to me it seems essential. My rheumatologist told me certain disease patterns at least let them know how to treat the problem even if they don't know what it is yet. I hear you on the immunocompromised part. Currently sick. Been in a flare. Can't tell if I've caught a bug or flare. Happens a lot. You hang in there to. It's good to talk to someone who understands.
Oh and yes I had to change my account. Lost access to email. It's me. Lol.