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I posted a week or so ago. My doctor received all the tests back and they conclude I do not have lupus. I do have a a high CRP which indicates inflammation somewhere and a slightly elevated liver enzyme (ALT). Everything else was negative; ANA, anti-ccp, anti-ssa, anti-ssb, and esr were normal. My doctor states that the tests may show I don't have lupus, but he believes that I have something autoimmune related with all the symptoms. I went yesterday to see him about swollen metacarpal knuckles and while I was there I was able to show him a red rash on left forearm and red dots on my thighs. He suggested I keep a journal of all my symptoms.

The doctor will monitor my symptoms and periodically retest. He said that sometimes it can develop slowly and blood test will take a while to show anything definitive. He reassured me that I am NOT going crazy and that all my symptoms are real.
 

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Kris:

Please do not give up. I am a serum negative lupus sufferer and I was DX on a skin biopsy and symptoms.

I have only had occasionally low C3 & C4, and one positive ANA all the rest of the standard tests are normal for me. I do get very high muscle CPK's when I flare. My ESR goes up only occasionally even though my knuckles and elbows are swolen from the inflammation. I do always test positive for Anticardiolipins, thus the APS DX too.

It sounds to me like you have a good Dr who is trying to find out the cause of your illness, perhaps you can discuss using plaquenil as it is a common drug for autoimmune disorders and may offer some relief for your discomfort.

Best of luck - let us know how you get on.

Stephanie
 

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Hi Kris,

It sounds like you have found a good doctor. Most doctors would have dismissed you once the lab tests were not conclusive. Definitely keep that journal. It will help the doctor get the complete picture of what is happening.

Take care,
Lazylegs
 
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