Diagnosed with Lupus but have negative test results
Hello. I am a 39 yr old female computer programmer living in Dallas, TX.
So. On Monday I saw another rheumatologist who, after looking at my hair and listening to my symptoms said that I have many "classic symptoms" of lupus and that he "...feels confident to go ahead and mark that I have lupus." He also put me on hydroxychloroquine.
My history in brief: constantly low white blood cell counts. Low neutrophils. This has been going on for atleast 6 years. I don't have much medical history on record prior to that. Saw a hematologist & rheumatologist 2 years ago. Both said that while I am immunocompromised, all test came back negative so I'm "fine" and then sent me home. ANA counts have always been high.
I have since fired my primary care physcian for various reasons and am now see a fabulous doctor - who also happens to be my boyfriend's doctor and has helped him diagnose his situation.
She insisted I see another rheumatologist, who I saw on Monday. He is confident I have lupus, although a very very very mild form of it since the lab tests done on Monday came back negative for lupus, rheumatoid arthritis, and sjordgen's syndrom. (Even the tests 2 years ago tested me for leukemia, came back negative.) So he insists I take hydroxychloroquine. I am.
It's weird to be diagnosed with a disease but have test results come back negative. I have all but given up.
My symptoms I've complained about:
* Fatigue - oh boy is this bad, i never feel rested
* Major hair loss - accelerated in the last 2 years
* Muscle pain
* sores in my mouth
* I LOATHE the sun. Now, i don't get skin rashes and I told him so, but the sun really really really hurts my eyes. And so does flourescent lighting.
* Sometimes my knees hurt, and my hips have started to hurt this really weird pain.
* He saw some swelling in a couple of my knuckles
* Difficulty walking - the pain is in my feet. but it's a dull pain, pain to put pressure on them when I first stand
* Stiffness and soreness in the morning
* EXTREMELY low white blood cell count and nearly non-existent neutrophils
* Very high ANA count
I dunno. I'm going to go see a hematologist again. I may go ahead and get another bone marrow biopsy (it'd be the FOURTH one.) and see what results of that. Apparently, I'm making granulocytes, and my EOS and BASOS counts are fine, but Neutrophils.. what are those? asks my body.
Ok. so. That's me in a nutshell as it relates to lupus. I'll be looking for more folks who have been diagnosed but have negative blood tests results for lupus. That's just so weird to me.
Hi. Nice to meet you.