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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Changes In Bloodwork = You Don't Have Lupus?

Changes In Bloodwork = You Don't Have Lupus?

Hello everyone. I'm just looking for some input because I don't understand and not sure I believe my Dr. I had extensive testing and 2yr of different specialist seeing me before I was diagnosed with Lupus (among other autoimmune diseases). I had textbook symptoms and my labs were there. My Dr retired so I had to go elsewhere. The new Dr I'm seeing says "Well you don't have Lupus, because the blood test are negative. And if you have it they would always be positive." My understanding from my… read more

posted November 22
A MyLupusTeam Member

Peggy thanks so much! That's how I feel! Dawn and Desiree, I WISH it was that easy here! There are exactly 5 FIVE in Jax! And we are military so there are very limited choices as to who I can see anyway. But the one I saw prior to this one was a nut case. She told me she couldn't help me because I wouldn't take the meds she wanted me on that were increasing my seizures. My Neurologist even told me to stop because that med lowered seizure thresholds (I had 6 in one day). But she wanted to fight me on it. My previous amazing Dr retired, and now we are with #3 🤦‍♀️

posted 6 days ago (edited)
A MyLupusTeam Member

Your labs results will fluctuate, and most doctors don't just diagnose lupus only from tests; they incorporate patient symptoms as well. You may be in remission now, but doesn't change the fact that you have lupus.

posted November 22
A MyLupusTeam Member

YES! ALLLLL of what you just said! I always give them copies of all my previous test from prior DRs. I keep a whole folder because I'm on disability! I also bring them over the results from the hospital. And yes I was on the steroids to bring down the inflammation of course. As I seriously could not even walk. So how once they test me again in my normal state and things look good, they can say I don't have Lupus as all these other Drs and test show I do, is confusing to me.

posted November 22
A MyLupusTeam Member

I can attest to the positive ANA one time and then the next time negative, and of course if your on meds, your levels can stabilize. Did you show him copies of prior bloodwork where it proved positive? Always get copies of bloodwork to take with you if you see a new doctor. And if your CRP was 48, heck that’s a sign of inflammation in the body, and if they prescribe prednisone, for a short course, it will ease that inflammation and being that level back down.

posted November 22
A MyLupusTeam Member

Another problem with experimental drugs is that possible interactions with what we already take are TOTALLY UNKNOWN!!!!

posted 2 days ago

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