Letter from bath rheumatologist

[catblue1865]

Just had letter from bath appointment, she said longstanding symptoms potentially consistent with uctd but low index of clinical suspicion. The longstanding nature of the symptoms is reassuring from a progression prospective. But I don't find that reassuring, I agree it's very unlikely I've got lupus as by now my kidneys would be affected but understood from reading that uctd did not cause organ damage (although skin is an organ and my photosensitivity is very bad).

I'll go for the calliscopothy test but if results are negative and no treatment/diagnoses made I won't be looking for medical help again.

[Spanielmadlady]

Not necessarily catblue. About 50% of lupies have kidney involvement so that means 50% don't.Out of the lupies I know I'm the only one with LN. Don't give up looking for medical help especially if you are struggling. UCTD still needs managing. I know it's hard I understand your frustration because along with many others I've been there but keep going x SML x

[CarolMcl]

Don't give up looking for answers, you have symptoms and deserve answers. I really don't understand who gave you the information that if you don't have kidney involvement then you don't have Lupus. I have Lupus and I have no kidney involvement whatsoever, I get checked at each rheumatology appointment as a precaution but I'm always ok. 🌹