Conflicting diagnosis concerning lupus

My aunt had something similar happen to her. She was diagnosed with and treated for lupus for many years at a large, well respected teaching hospital. At some point over the last several years she was told by the same facility (different doctors) that she did not have it. She has serious kidney issues now. Are you okay except for muscle pain?

What does your blood work register?
Your experience and Celia's aunt's are pretty scary.
https://www.lupus.org/resources/lab-tests-for-lupus

doc don't go very specifics with me=just said didn't show had lupus,

I have raynauds that I'd been told was secondary 2 my lupus. also tendons very impacted, more so than joints. fingers pulled down towards palm, nodgels on elbows, hand knuckles. swollen and tender spots between hand knuckles, and on balls of feet. my upper arms and tops of thighs painful to touch. like if my 8lb cat just walks across thigh 2 sit on lap, excruciating. and pain lasts for several hrs after. tendon in r knee painful enough to hinder walking at times. rashes in ears sometimes. sores in mouth and nose sometimes. sometimes tasks can cause my wrists to swell and b painful (or other soft tissue.) then will get better. the waxing and waning of symptoms remind me of mom and her lupus... run low grade fever with no explanation at times, catch eveything coming and going and SOOOO hard to get better.

how ur aunt doing now?

oh,yeh, profound fatigue omnipresent

I think the symptoms she had supposedly from lupus have resolved, however she struggles with dialysis. It’s very challenging, but she’s hanging in there and drives herself to dialysis most of the time, since her husband became ill. She stays active and maintains her own home with help from her daughter. Most of her problems are now the dialysis port. She’s quite the inspiration to me. My family has multiple people with autoimmune disorders, such as RA, type 1 diabetes, psoriatic arthritis, psoriasis, hypothyroidism, etc. We thought she had lupus, but now…..I’m not really sure. Were they right years ago? Are they right now? Is she in remission? Idk…..it’s certainly a mystery.

I hope you can find experts to properly diagnose your situation. Please post what you find out.

sounds like an inspiration! yeah, all kinds of autoimmune diseases on mom's side. like i told doc, one of the tests was wrong-either first one, or this one. went off on me-oh, no, my tests r correct! thanks 4 ur well wishes. i may have 2 travel 2 ky 2 see another specialist. we'll see. once ur body has made the antbodies to ur own dna, dont think matters if in remission. was my first thought, tho. woulda liked 2 have asked him, but visit wasnt going well with him..

Best wishes to you!

You might consider requesting then gathering your lab work.