Confused and undiagnosed
I've has one positive ANA titre 1:160. Then I've had elevated dsDNA while ANA is negative. I've been really sick since 2014 with no real answers. I have all symptoms I see for lupus except malar rash on face but I'm super sun sensitive so stay indoors. I have hemorrhagic cystitis, vasculitis, and years of seizures and migraines. Joint pain to the point I use cane now. Spondylosis, stenosis and scoliosis so back pain is a given. I thought I had Behcet's but rheumatologist thinks it sounds like lupus. What if my tests never turns positive? Is that possible? And can I still have lupus?
, I'm sorry you have been living with so much pain and confusion for so many years. Unfortunately, this is all too common in the lupus community. You are not alone. We have had many members write similar stories about living with lupus, even while getting negative ANA blood test results. Here is a link to a story similar to yours: https://lupus.net/forums/negative-ana. Hope this helps!
Gabby (team member)
what a difficult time you’ve had. The blood test can be false positive and just one tool i. Diagnosing lupus. but, that’s why the docs have criteria to go by as well. Here is a listing of other things they look at https://lupus.net/diagnostic-criteria
I hope you find out what’s going on. ~Racquel ~ lupus.net team member
Get 2nd opinion
LOL. I've lived in 4 different states, numerous towns and seen more doctors than I can count. Its more like a 16th opinion. Ive been scheduled at Mayo. Then covid hit. The undiagnosed disease network has accepted me to enter information and get doctors approval but this is taking more time since i just started seeing new ones. The last 2 rheumatologist have assessment of connective tissue disease, lupus, polyarthritis, vasculitis of unknown origin.
Hi there, your story is what many of us experience. It took over 3 decades for me to get a diagnosis. Along the way, I've made many adjustments to my life to deal with it, as we all have. I wish you luck in your journey.
