Hi everyone. I wanted to come back and update you all since you were so kind and helpful before. I have seen a couple different rheumatologists and rare disease specialists. I haven't made it to mayo yet, the trip expensive is a bit big atm unfortunately. That said: two of my doctors have two different theories; fortunately the treatment is the same! My rare disease specialist believes I have seronegative Antiphospholipid Syndrome, due to my frequent livedo reticularis and other APS indicative symptoms. My rheumatologist believes I have seronegative Sjogrens Syndrome and some kind of seronegative MCTD. Either way, I have been treated with 200mg then 300mg Plaquenil for the last 5 months or so. Within weeks my bursitis and tendonitis was half of what it was, and my joint pain was significantly reduced. Now, several months out, I have about half the joint pain I had before, and only very mild tendonitis and bursitis, though it persists in my ankles, shoulders, hips, and wrists. I am going to be getting a central line soon so that I can receive more regular infusions for my POTS, which makes a huge difference in my wellbeing, and I recently had sinus surgery which has helped my breathing and infections a ton! They also diagnosed me with Common Variable Immunodeficiency as my IgG was very low, which explains the frequent infections. I definitely still struggle with a variety of things, neck and right upper quadrant pain have been the biggest issues for the last year or so. I may need hip reconstruction shortly as my right hip, we've found on MRI, has some structural abnormalities, tendonitis and bursitis, a tear in my labrum, and a tear in my gluteus maximus. But overall I am doing much better and am very fortunate to have found physicians who treat my symptoms, not my bloodwork, and listen to my concerns. Thank you all again!
How wonderful that you found doctors who listened to you and were able to put the pieces of the puzzle together in order to reach a diagnosis, @zebraclaire97. It must be gratifying to be feeling better and to have doctors who will listen to your concerns.
Advocating for yourself and continuing to seek answers to hard-to-diagnose disorders is very important. You have shown that being proactive and persistent has paid big dividends in your well-being!