I saw my rheumatologist today and asked her about being tested for lupus. I remeinded her about my sister having lupus but not testing positive.
The Dr. told me my anemia is not the kind they see associated with an autoimmune disease and that it's not that bad (then why do I feel so tired?). She said that white blood counts are usually low with lupus and mine are high.
She also told me that a "response to medication" like my sister had with Plaquenil is not a definitive diagnosis of lupus as her first rheum. told her. My Dr. said that Plaquenil can help people with RA and other non-specified inflammatory diseases. She said the diagnosis really doesn't matter if the goal is to feel better and someone has a positive response to medication.
When I asked her about all the "chronic inflammation" is various parts of my body and now in my mouth, she said "we know that other things can cause chronic inflammation besides lupus".
The facial rash is very prominent today which she has ignored in the past.
Upon exam she found that several of my joints are inflamed. I gave her the list of tests which some of you had posted from The Lupus Book (Dr. Wallace) and she told me that a few of them are not related to lupus but to other problems like MS and CNS diseases.
Either she was somewhat irritated that I wanted to be tested or she didn't like the idea that I had info on the kinds of tests I might need or something. The conversation seemed full of mixed messages from her as she said she was not opposed to trying Plaquenil. She also decided to order several blood tests and put the diagnosis code for SLE right at the top of the order requisition. She said she would see me back in a month and talk about trying the Plaquenil at that point depending on my blood test results.
So with the diagnosis code on my labwork orders, does that mean she thinks I have lupus or that I Do have lupus or what??

Dear "yes", When drs. write the name of a disease/condition on a test order-form, I think it's to convey WHY they are ordering the test(s) they've checked. i.e., it's not a diagnosis, it's more of a ballpark in which they're looking.

Writing something also enables other personnel to chip in. Once or twice while I was in for hospital tests, the lab staff phone my dr. to suggest a different & better test in lieu of the one originally ordered. Or sometimes a test is discontinued and replaced by a newer test, so the lab needs to know WHY a test was called for, in order to suggest the newer test(s) for that condition.

I know it's hard waiting for your results & follow-up appointment, so you just hang in there, OK? With best wishes, from Vee

Thank you, Vee! I appreciate that explanation. She was actually more concerned about my BP yesterday than she seemed to be about the lupus testing. My BP was 160/110.
She said, "We did the tests on you in 2001 and you were ok." But I have more symptoms now and HELLO..... it is 2007!
I guess I have to be patient and in the meantime follow up with my gp for the blood pressure. I had 3 days of premature ventricular contractions again too. (Every 4th or 5th beat felt like it skipped or stopped and I see my pulse in my eyes when I'm in bright daylight) I think it's the stress of wondering what is going on and wondering if Dr.s are going to believe me.

Just wondering if anyone else has/had high blood pressure with lupus?
Thanks in advance.