Two years ago: No sign in blood. Other tests normal except for eyes. But biopsy positive. Two years later of unimaginable illness. New biopsy for research study - negative. All else negative, again, except for eyes. Feel better. Off all meds. Six months later - losing weight for no reason, sleep issues, pain issues.Tingling in my lips!!!
I am looking for very specific responses. This happened to you? You read about same? I am set for a new biopsy as part of the research study at the close of the year. I am so panicked that you have no idea. I barely made it through the last round of this nonsense and can't imagine it again. Treating with one of the prominent Sjogrens doctors mentioned on this board. Thank you in advance for you help.
If you had one positive lip biopsy then why would they want to do another? I was under the impression that if you have one positive lip biopsy that you were considered positive. Why more? For research or to help you? You are not a Guinea pig to practice on!
Is your doctor treating you with any meds? I am seronegative and am lucky to be treated by my very experienced Rheumatoligist. However, he is not a Sjogrens expert, but is an expert on Rheumatoid Arthritis, which thankfully, I do not have.
If you are seeing a Sjogren's expert than I consider you very lucky. I'd be happy to participate in research as long as I was being helped in someway, too. Keep us informed on how you are doing.
Good luck to you.
Kathy