How long did it take you to get diagnosed? negative ANA

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New Member

Date Joined Oct 2017
Total Posts : 2
   Posted 10/22/2017 3:22 AM (GMT -6)   
I've just recently been suspected for also having lupus. My ANA's are negative, but my CRP marker's have been really high for the last 3 months. I am currently waiting for my referral for the rheumatologist to be approved. I've been sick off and on for years, but no one could figure out what's wrong. My doctor saw a malar rash on me and is sending me to the rheumatologist even though my ANA's are negative.

I've always got these blushing rashes on me during the summer's. My arms and hands would also swell and become stiff if I was outside too long in the heat. I also seem to get the malar rash, if my anxiety is high, or even if I'm just sitting next to the heater for a little bit. I have Joint pains. I get headaches a lot. I get hives randomly on my body sometimes that itch. I lost a little bit of my hair for a while. I also have really bad fatigue.

I just want to know, how long did it take you to get diagnosed with lupus? What was your experience?

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 10/22/2017 8:39 AM (GMT -6)   
I had unexplained extreme fatigue for a couple of years, my GP couldn't figure it out until one day she decided to run an ANA. She then told me she thought it might be Lupus, and sent me off to the rheumatologist. He took one look at me, at my lab tests, and started treating me immediately.

Others will more mysterious symptoms may take a while to get a firm diagnosis. Sometimes Drs are a bit hesitant to diagnose until they are absolutely positive. I've found that starting treatment is sometimes more important than getting a diagnosis (unless you need the dx for insurance or disability) -- with a disease that presents in so many different ways, often they need to see how it responds to different medications to actually determine if it's Lupus vs. other similar diseases.

Best wishes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Oct 2017
Total Posts : 2
   Posted 10/24/2017 2:58 PM (GMT -6)   
Thanks for the reply, Lynn. I'm still waiting for the letter from my insurance to approve the rheumatologist visit. I see my GP in a couple weeks, so I can ask for a status on the referral, if I don't get anything from the insurance by then.

Veteran Member

Date Joined Apr 2006
Total Posts : 1342
   Posted 10/27/2017 2:59 PM (GMT -6)   
I had low platelets and RBC for at least 15 years but otherwise healthy. Then in 2004 my platelets dropped to almost 0. Nobody could find anything wrong and my hematologists said he thought I might have lupus after months of testing and eliminating bone marrow diseases. 2 months later I had clinical symptoms and was diagnosed. Most of my friends took 1-3 years or more to get a diagnosis which is by clinical symptoms and labs. Important to see an experienced rheumatologist for diagnosis and treatment because they know how strange lupus is and how difficult it can be to diagnose and treat.

MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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