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I have seen several rheumatologist who have dismissed me because I do not have organ involvement.
Despite me having all of the symptoms including a positive scalp biopsy that caused scarring alopecia.
My Internist is a rare breed. He says he will continue referring me to new Rheumatologists until we find one who treats my overlapping mess. He sent me to neurology to get around these inept Rheumatologists. Unfortunately, SC doesn't attract the best and brightest, and many here have all been shaped by training supervisors who have a purist mentality when it comes to treatment. They won't treat you if Lupus isn't causing obvious organ involvement. I have minimal scarring on my face, and that's a blessing. I've lost a lot of hair, but have no lesions causing total hair loss. My legs are a swollen mess, especially my ankles. I have weakness/pain in my hips, back, and upper arms. I walk funny because of this weakness/pain. My esophagus is rigid and my whole digestive tract lacks adequate paristalsis. I get both heliotrope and malar rashes, along with psoriasis too. They are fine dismissing these symptoms and test scores confirming them (myopannel 3 plus), because I'm harder to treat for one thing, given the overlapping conditions. I've had two rheumatologists in the last three years willing to work with be but then retire, passing me to underlings who then refuse treatment. I'm tired of the promises of treatment, then having the rug pulled out from under me. My worry is things will only get worse in the meantime.
I was just told by a new rheumatologist that my lupus was magically cured, because I went from a positive ANA to a negative one. She says no organ involvement means I don't have lupus anymore??? I still have incredible fatigue, joint pain, Raynauds, and muscle pain in my upper legs and arms. My mid back throbs most days, I'm losing hair, have a malar rash, but I am magically cured? What are these people smoking? Is this what they are teaching new Rheumatologists? I still have positive Myomarker 3 panels, so something isn't right? My Internist sent me the neurology route, because he thinks Rheumatology is too quick to dismiss people, especially when I've had 30 years of positive labs. I'm wondering if a medication, supplement, etc. is messing with the labs at this point, because I certainly don't feel cured!
@A MyLupusTeam Member, does your rheumatologist realize that our labs don't always match how we feel? I am glad your other doctors do.
@A MyLupusTeam Member your kidneys can look like they're functioning well in labs and even on a biopsy, and you can still be experiencing lupus. I had a kidney biopsy done with "normal" or slightly elevated protein. My blood tests according to doctors looked fine, and still the biopsy showed class III and class V lupus nephritis. So the other important thing is documenting all your symptoms literally, advocating heavily for you and your body and really beginning research on the complexity of lupus.
Also, search for other Rheumatologist that may be able to further investigate for you.
I agree.. but that's exactly what I was told.. that because my kidneys are functioning well..
I'm not positive for lupus
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