Positive ANA speckled test - MCAS

[JKUK]

I was diagnosed with Mast Cell Activation Syndrome earlier this year but the treatment hasn’t helped much. I have weekly bladder instillations and have been on antibiotics since Feb. I had a cystoscopy which showed biofilm in the bladder. I also have gastro issues and sensitivity to food - MCAS diet didn’t help at all. I have an inhaler also but lungs are broadly okay. I also have muscle pain but pregabalin (Gabapentinoid) and some light stretching / walking has really helped. Before this some days I was bed bound but prior to that when I was well I was running 5-10k 4 times a week.

I have just got a test result back for antinuclear antibodies which was Positive, Titre 1:80, Speckled. Over 1:4 suggests an autoimmune condition and speckled can indicate lupus.

My dsDNA Ab was negative. Which is good news.

I did look into if I had lupus last year but was told no as I didn’t get the butterfly rash but I’ve since read not everyone does?

Does anyone have any advice, suggestions or thoughts on what’s going on? Thank you!!

[Treetop33]

I'm not sure I can help, but I never got a butterfly rash with lupus and that's my diagnosis. A lot of autoimmune conditions have similar symptoms. Your docs would need to test for more antibodies.