Hello all, I am brand new to this forum and figured I should join since I’ve been googling for a few weeks and sclero.org shows up in almost every result!
I’ve been googling because I’m so confused and I’m looking for answers that I’m afraid might not be readily available. I apologize in advance because I feel like my story is long and frustrating. I’m female, aged 33. Earlier this spring I started getting a series of facial flushes with alcohol consumption or cold weather. My primary diagnosed me with rosacea and he also prescribed some metrogel. Two weeks later I called his office again asking for a referral to a dermatologist. He denied me a referral and said he wanted to do some blood work first to rule out lupus, just in case. Lo and behold my ANA came back positive, with a speckled pattern. He then did a panel of tests for RF, double stranded DNA, CBC, etc, all which came back negative or normal. He referred me immediately to a rheumatologist anyway, and it took some months to get in.
I spent a lot of time with anxiety expecting some sort of lupus diagnosis. In the meantime I did get into a dermatologist who is treating me for rosacea with finacea gel and my progress there has been dramatic.
In September, some months after rosacea treatment, I got into my rheumatologist who assured me I wasn’t going to have a lupus diagnosis because, quite frankly, I don’t have any AI symptoms, let alone meet any of the diagnostic criteria (since ANA alone isn’t enough).
He did a physical examination and ordered a bunch of blood work. He mentioned that ANA alone isn’t enough for a clinical diagnosis but if it was still positive he’d want me to check back in a year just to keep tabs on me.
Unfortunately, when I got my results back, not only was my ANA positive at a high titer (higher than my first test!), also there was a positive result for CENP-B. My internet research has taught me about limited scleroderma and CREST, etc, but my rheumatologist still doesn’t want to see me for another year.
I’m so freaked out. I know logically that I should just adopt a strategy of watchful waiting if I should start to develop symptoms but I feel like such a ticking time bomb. I don’t know what’s in store for me. My friends and family all say that I should just keep it in the back of my mind and to live my life but I’m seriously struggling. Are there people like me on these boards? Scared and waiting around?