So far I’ve repeatedly tested positive for Homogenous ANA 1:360

dsDNA is present but winds up too low to be considered positive.

I have very active symptoms tho including low platelets due to antibody activity, pain, swelling, rashes and sun sensitivity. My list of symptoms is a mile long 😣

I’ve also tested low positive for a very specific antibody that relates to kidney involvement....which makes me nervous. I’ve only begun getting treatment this year and have been on and off steroids and quickly began Plaquenil so I suspect we’ll never get a good gauge on my antibodies now. Thankfully my rheumatologist recognized the disease and figured it’d be irresponsible to wait on treatment in order to keep testing and pinpoint a diagnosis. Instead he wanted me on meds immediately

Great to know! Thank you so much! Would you mind sharing what antibodies you have tested positive for with UCTD? Completely understand if not. Just trying to wrap my brain around this whole thing.

One of my 1st symptoms was a problem swallowing!! I was 17. I got terribly sick & the first signs were a difficulty swallowing like something was stuck in my throat. I lost a lot of weight. My red and white blood cells and platlets all dropped terribly low. There’s a name for the type of anemia I suffered but I now forget. I became jaundice and my liver values were all over the place with sky rocketing bilirubin

My doctor couldn’t figure it out. I was sent to a gastroenterologist. I was poked and prodded and they found nothing physically wrong with my throat or stomach. They eventually labeled me anorexic 🤷‍♀️ and stopped testing for disease.

To be fair, by that time I was anorexic but it wasn’t because I wanted to be skinny....it was because I was feeling so unwell and had a lump in my throat that led to anxiety when I ate

After another 25 years of suffering I finally got a diagnosis. And the few remnants of lab results I have from that episode as a tennagers all point to it having been my first lupus flare

And now it all makes sense. I’ve had low platlets since birth and spent my childhood always covered with bruises and dealing with spontaneous nose bleeds. I was always covered in hives but we could never figure out the culprit. I always had HUGE swollen glands. I looked like Frankenstein! My mom always feared there was something really wrong....the doctor claimed it was nothing and some kids just have prominent glands 🙄 And I started having debilitating migraines at 3, both headache and abdominal along with gastroparesis

This disease sucks because doctors just seem to overlook it til people become disabled by it and because the testing is so expensive that it’s impossible without insurance

I have difficulty swallowing also, almost like a lump in my throat and loss of appetite. It appears to be related to anxiety for me, I guess because if I take clozapine it seems to go away??

I am so grateful for your response. I too have had a very long list of symptoms. I’ve had ANA positives 640 and 320 and then most recently a negative (but still testing positive for RNP/Smith). I’m not sure if you’ve experienced any difficulty swallowing? I’ve also had excess saliva vs. dry mouth. Having to go to an ENT to see what’s going on. All very frustrating.