Hi there, I’m an 18 year old white female and I’ve been experiencing symptoms of an autoimmune disease for 5-6 years. It started out with periods being incredibly painful and irregular (I’m now on birth control.), my hair falls out and breaks off, I still only get sunburns with any sort of prolonged sun exposure no matter the strength of sun screen used (I’m 3rd generation italian American, burning is not the norm.) and just last year everything got so much worse. I developed large, dry patches of red, irritated skin on my arms and chest that wouldn’t go away with any sort of moisturizer; the rash now appears not long after heat or sun exposure, but it doesn’t itch. Along with the rash on my arms I developed levido reticularis on my legs that won’t subside, and what seems to be the “butterfly” rash. I also developed chronic migraines that I’ve been on 4 medications for so far, none have worked. My eyes have become very sensitive to sunlight, and I’m constantly having an inflammatory response that’s visible in my eyes, face, hands, knees, and ankles. My skin is very thin and translucent, I regularly get sores in my mouth that aren’t painful until I accidentally bite down on them, my eyes and my mouth are both always dry, and I experience brain fog periodically.
Last august I had blood work done by my primary care provider, and these were the results:
ANA SCREEN, IFA: positive
ANA TITER: 1:80
ANA PATTERN: nuclear, homogeneous
RHEUMATOID FACTOR: negative
THYROID PEROXIDASE ANTIBODIES: normal range
THYROID STIMULATING HORMONE: normal range
T4, FREE: normal range
I was then referred to a rheumatologist.
The rheumatologist ran more blood work:
ANA W/ REFLEX TO ENA: negative
RHEUMATOID FACTOR: negative (again)
CYCLIC CITRUL PEPTIDE ANTIBODY IGA/IGG: negative
I showed her months worth of photos following the progression of the rashes on my arms, chest, and face, that were still present during the appointment. She mentioned maybe wanting to do a skin biopsy but for some reason she didn’t. In addition to the blood work, she also ordered X-rays of areas my physical pain was most concentrated; my hips, knees, shoulders and ankles, none of which showed any irregularities.
When I saw my patient visit summary, it was clear that the rheumatologist I saw didn’t listen to me at all. I told her about every single symptom I mentioned above. She wrote that I experience no migraines, then mentioned the medication I take for my migraines. She said I had no photosensitivity problem or sun sensitivity, and then wrote off my sudden inability to synthesize vitamin d into melatonin as though I’m a ditzy girl who wants a sun tan but Is worried about sun damage, with no mention of my inability to keep my eyes open when I’m in sunlight because it HURTS. She said I had no dry eyes, no mouth ulcers, and no dry mouth, then later in the same chart says I experience dry mouth. The most enraging part of it all, that chart says I have no symptoms of lupus present. She also said my joint pain is attributable to hypermobile joint syndrome. Something I’ve had my entire life, but I’m only just recently having joint pains and inflammation. She’s now telling me to see a geneticist.
Given my symptoms, my blood work results, and everything my rheumatologist didn’t bother to do or completely ignored, what do you guys think I should do?