Confused on How Lupus is Diagnosed

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New Member

Date Joined Jan 2012
Total Posts : 2
   Posted 1/13/2012 3:08 PM (GMT -6)   
I am really confused about how lupus is diagnosed. I have not been diagnosed with Lupus (thought we had ruled it out), but I have had continued immune system issues for 3 years. Now I am getting further tests regarding low blood protein levels and protein in urine, so now I'm back to wondering if it is Lupus.

A lot of the symptoms I have are same as same ones as listed for lupus - but also same as chronic fatigue (CFIDS).

I went to a rheumotologist about 3 years ago when symptoms first started presenting. The primary symptoms at that time were major fatigue, headaches, rashes caused by any exposure to sun, and hands turning blue (which my primary doc witnessed), anemia, cold hands/feet.

The rheumotologist tested my hands for Reynaud's by putting my hands on ice for several minutes to see if they would turn blue/white on demand. They did not. He had my blood tested for C Reactive Protein (normal) and did a cryoglobulin test (normal/negative). I could swear that he did an ANA test (and that it was negative), but I can't find a record of it, so now I'm not sure whether it was done.

What tests should a rheumotologist do to decide whether or not you have Lupus?

Even if I had negative ANA, that doesn't rule Lupus out, right?

Would it rule out Reynaud's or one of the symptoms of Lupus if my hands don't turn blue due to ice cold, but do still turn blue sometimes, perhaps due to stress?

Thanks so much for your input.


Regular Member

Date Joined Jul 2010
Total Posts : 468
   Posted 1/13/2012 4:46 PM (GMT -6)   
Hi Anna,

I am actually confused as to how Lupus is diagnosed and I have been! This is a very confusing and fustrating disease. One way it can be diagnosed is through blood test but my Rheumy told me these test are not reliable as they can change. When I first started getting sick I tested pos ana twice I also had the facial rash but I did not get a firm diagnose I just got the "maybe we'll see". It took 5 years to get a diagnose and I just started treatment. I actually gave up but met my Rhuemy by chance when he filled in for my PC (who was his brother) one day and I told him my issues thats when he gave me his card. I went over everything and he said by the symptoms I appeared to have lupus. He tested my ana but this time it was neg! I think one of the final things though along with sypmtoms that got me a diagnose was the fact my previous blood test was pos ana with a low C4 serum level that is a dx tool for lupus as people with sle have high ana and low C4. So it really is a combination of test and symptoms.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/13/2012 6:33 PM (GMT -6)   
I had a high ANA (1:360 titers) but everything else was normal. I had a lot of the symptoms though: joint/muscle pain, fatigue, raynauds, rashes.
My doctor said mild lupus.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 1/13/2012 8:58 PM (GMT -6)   
Here are the common symptoms of Lupus:
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Jan 2012
Total Posts : 4
   Posted 1/14/2012 8:18 AM (GMT -6)   
3-5% of all lupus victims test negative. There is no diagnostic test that guarantees a DX because normal people can test positive. I've had lupus for years and the stupid docs never listened to my symptoms or they would have dxd me years ago.
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