Hi Everyone -

Here's a little background. I started feeling bad in college, lost a lot of weight for no reason, etc. I never went to the doctor mostly because I was scared of what they might find (foolish - I know). Now fast forward about 10 years and I start feeling really bad. This is all flared up after taking Zithromax for a sinus infection. I went to my Dr. numerous times and he kept telling me it was all related to stress. Finally he tested my ANA. It came back positive 1:320 Speckled. Since then it has come back at 1:160 Speckled but this obviously means nothing because if anything I feel worse now than I did then. I was in major denial that this could be an autoimmune disease - didn't want to believe it. I just went to a Rheumatologist 2 weeks ago and he told me he thought even with my positive ANA and my chronic low white/red blood count that I have fibromyalgia but he would run a few more tests just to be sure. My Anti-DNA/Anti-Smith came back negative, RNA test was negative but Anti-RO (SSA) test came back positive. The range was 0-49 and my result was 218. My sed rate has been tested numerous times and is always around 10. My urine test was completely normal as well. I do not have rashes or swollen joints which I know does not rule Lupus out but I do have extreme muscle pain and what almost feels like bone pain. I go back to see Rhuemy 8/28 but does anyone have an idea of what could be going on? Thank you for any words of advice.

Hi, Laura, and welcome. I'm sorry to read about your problems---not good to go thru things like this.

I had problems for many years, since childhood. I finally tested positive for anti-Ro but negtaive for ANA, in summer of 2000. Unlike you, I'd had rashes, though, for some years: annular (circular) nonscarring lesions on my upper arms & torso. Based on multiple skin biopsies & on bloodwork being positive for anti-Ro, I was Dx'ed with the intermediate form of lupus called SCLE = subacute cutaneous LE, by a NYC rheumie.

This Dx came after YEARS of tests by suburban GP's, rheumies, urologists, gastroenterologists, etc. By this pt., I'd also been anemic for years, and had had migraines, GI problems, urinary problems, rashes, fatigue, hair loss, weight loss, (etc.)

I was told that in this form of lupus, when anti-Ro is positive, that 70% or so have positive ANA, leaving me in the minority that do not.

I was also told that people with positive anti-Ro can have Sjogren's Syndrome, which I don't have the symptoms for.

I was put on Plaquenil & told to avoid sun---and these measures have brought a lot of improvement. (A bit of a joke, in that I felt episodically rotten since age 3 or so---and I'm now 53! Oh, well....)

I hope you write back if you want to kick these ideas around further, OK? Meanwhile, wishing you the best. Bye for now, Vee