Using AVISE Lupus Monitor for Diagnosis

[zabrtoothtiger]

Hi there,

21F, Sister had lupus, lost her to suicide, been feeling on and off terrible for a good two years, but this year it got worse in the beginning and is flaring a bit more frequently every few weeks. To keep it short, I was diagnosed with fibromyalgia by a rheumatologist that I’ve been told by my PCP I wasn’t even meant to see because he blows everyone off. I have positive direct ANA and then negative indirect ANA. Fast forward I’m with a new better one who listens to me and orders more tests.

Now, he ordered the AVISE SLE Monitor test for diagnostic purposes- which from reading about it (compared to the AVISE CTD/Lupus test) it’s more so used to well monitor SLE... I’m just wondering if perhaps it wouldn’t be as helpful? I don’t really know and I don’t claim to know which is why I’m asking here. Has anyone else had an experience with using the AVISE SLE Monitor test as a diagnostic tool?

Thank you for your time and patience ahead of time. I wish you many spoons today 🖤🖤🖤

[Freckle1000]

I'm really sorry to hear about you're sister. It's a very traumatic thing for family left behind to deal with.

I've got to admit I've never heard of the AVISE testing - but just had a google - and it couldn't hurt ? Some of the pathology tests included are normal lupus tests - but the others are brand new to me.

Good luck with it !

Don't let yourself be fobbed off. Keep Doctor bothering until you've got a decent answer for yourself.

X

[zabrtoothtiger in reply to Freckle1000]

Hi! I’m so sorry about the late reply! Thank you for your condolences. It was a terrible reality to live with for the first two years. I single handedly became the anchor for everyone else in the family and set up everything funerary (maybe real word?) wise. Didn’t get time to heal until really this year tbh.

Yep, AVISE is some fancy test for Lupus or other CTD diagnoses. Unfortunately, mine came back normal despite also getting weird blood results from the normal CBC, Sed rate, etc., so we are back to square one.

I will keep bothering the doctors though! Thank you for the encouragement! Hope that your own symptoms get more manageable and that you have some time to rest and relax soon. 🖤🖤🖤🖤🖤

[Freckle1000 in reply to zabrtoothtiger]

I hope you've had more time to heal and things get better for you and can take things slowly and easily to be able to look after YOURSELF. Having lupus and being on a benefit- over time I've ended up as the psychologist and general dogs body for the family's problems, emotional and practical. It's something that's gotten out of control over time, so now - I'm just working on reigning a lot of it in. It's not a great dynamic when you're unwell. Not quite right.

X