Concerns about Misdiagnosis of Lupus

After the shenanigans of November last year, I feel so much more convinced I've been misdiagnosed and actually have Lupus that's hiding (no + test results but thats common in women until later in life ive learned) - I mark so many symptoms and the litany of tests to figure out my FSGS show that something just kind of sporadically eats my red blood cells. I go back to my rheumatologist soon to play catch up with everything that's happened, is there any way to try and broach the lupus topic again without seeming like some sort of hypochondriac? I don't want the answer to quite possibly everything to be missed somehow like my FSGS was, especiallt with how low some of my hematocrit tests were in between normal ones over the past few months.

Your answer

Nicole2857

2y ago

I understand 100% I've been dx w systemic lupus, oa, facet arthritis, oateochondromas and now I'm being told that the lupus shares are much with remitting ms that we now need to see another neuro to try for correct dx. Regardless, in the meantime I lie in bed watching life pass me by. There is no pain treatment except ibuprofen or tylenol which is dangerous in their own right. I would never hurt myself but I do at times envy those who have passed. 😥 I was dealing with all this since 2000 but the treatment was there, now, no treatment, no quality. I just want my life back.

NanN

2y ago

If you are by any chance taking Azathioprine, in very rare cases, it can cause death of red blood cells, so all of your Hemoglobin, Hematocrit, and other values having to do with the red blood cell will be wonky. I was hours from death due to Azathioprine. Had to have 10 units of red blood cells. Also, it IS possible to have rheumatoid arthritis, and possibly lupus without a rheumatoid factor, or other lab values suggesting autoimmune disease. The lab values are a small part of the diagnosis. You are NOT a hypochondriac. It's important to go to a seasoned arthritis Dr. I am awaiting test results for the chronic things that I have. No matter what, treating symptoms in a safe, effective way is of prime importance. One of my surgeons from near 2 decades ago said that his opinion suggests that my issues were "highly rheumatologic". If the Dr. you have is not addressing your concerns, go to someone else. God bless!🙏

Lyriel

2y ago

I'm on plaquenil so the only concerns there are possible heart issues. My main issue with almost every doctor the past few years has been dismissal because I'm "too young" my current rheumatologist is pretty good, just feel a little like a broken record coming back to lupus with every doctor lately. Thanks for the response!

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