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Lupus or not Lupus?

Autoimmune Diseases | Last Active: Feb 25 10:00pm | Replies (45)

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@djanthony

Hi. I'm new to this site and read your post. Immediately, I could see everything you went through as exactly what I went through so wanted to tell you what the result was for me. I, too tested on and off for positive ANA. So, Doctors did not consider lupus (SLE) for many years. I had almost every symptom of systemic lupus but the Doctors argued that I could not have lupus with a negative ANA. One day I decided to attend a lupus support group and listening to the members, I was convinced I had lupus. Finally, my new Therapist heard me out and suggested I see his good friend, who happened to be considered the very best Rheumatologist in Atlanta, GA. He was able to get an appointment for me with Dr Gary Myerson. Dr Myerson examined me and said he was pretty certain I did indeed have lupus. He explained that although most Doctors use ANA as their most frequent screening test for lupus, many patients NEVER test positive for ANA, even though they have lupus! He ordered a more specific (and more expensive) test called "double-stranded anti-DNA autobodies" test and the results showed high titers for systemic lupus. After ten years of going from Doctor to Doctor, never finding an answer, and having been called a hypocondriac by one, I finally had the correct diagnosis and was put on Plaquenil which, after about six months had me feeling much better, less fatigued, and reduced the malar, or "butterfly rash" on my face. I am very grateful to this Rheumatologist as I believe he saved me from permanent kidney damage and other possible complications of lupus. Just three years ago I lost a good friend, who passed away at 58 years of age from Systemic Lupus. Call me blessed.

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Replies to "Hi. I'm new to this site and read your post. Immediately, I could see everything you..."

Thank you! After awhile I think you start questioning if it's all in your head but your body keeps telling you over and over something is really wrong. My endocrinologist, the day after I posted that basically threw her hands up and said ok, yes there is something more to this that we weren't finding and gave me a referral to a rheumtologist at KU medical center who specializes in some of the more 'obscure' autoimmune. I will discuss that test with them. Thank you for suggesting that, but also for reminding me I am not alone in this.

Hello @djanthony, welcome to Connect. Thank you for posting what you found to help you and alerting others with similar symptoms.