Autoimmune Disease? Adult Onset Still’s Disease? EBV?
I’m a 30 yo female, I’ve been struggling with flare ups of repetitive symptoms for YEARS…took a long time to get someone to really listen since my blood work always seems to be mostly normal from what I’m told.
Finally had a doctor that suspects autoimmune disease, and I was supposed to have my first appointment with a rheumatologist today (finally), but of course because the universe is conspiring against me they had to cancel it. Rescheduled for Monday. I’ve waited years, I guess I can wait a few more days 😩
BUT, I was doing more endless research, and I came across Adult Onset Still’s Disease. It seems to match many of my symptoms, and I know it is autoinflammatory, not autoimmune, but I was wondering if anyone has any experience with it?
My ongoing symptoms primarily include (in random recurring events):
•Red/pink splotchy flat rash, mostly on trunk and thighs, not itchy, no pain, I don’t even know it’s there until I happen to see it.
•Low grade fevers
•Joint pain and crepitus, particularly in my hands/wrists, ankles, hips, and back (back may be due to other things)
•Swelling of the legs/ankles/feet
•Newer symptom: Spot rashes that are circular and raised, extremely itchy, always come and go in the same spots (usually elbows, inner arm, inner thigh), not red or colored, tend to leave temporary lighter patches once they clear up
•Newer Symptom: Night Sweats
Also an assortment of other smaller things that may or may not be related, but those are the main things.
Also, my mother has Multiple Sclerosis, and I am an EBV carrier.
I’ve been severely ill and/or hospitalized a few times with no real answers. Most recently last year. Would love some input and ideas to take to the rheumatologist!