I've been a lurker for years... mainly in the migraine forum, but most recently here.
In 1992 (I was 12) my body freaked out one summer afternoon at the lake. I jumped into the water to cool off. Once we hopped back into the boat my friend pointed to my legs about 5 minutes later and I discovered they were covered in welts and hives, and my knees swelled up to the point I could neither straighten nor bend them. My entire body, neck down, was swollen and puffy and covered in these welts.
After a few weeks it was determined that I had an "enzyme deficiency" and Cold Urticaria. They said I'd eventually outgrown the urticaria, which has lessened over the years (mostly due to keeping covered and being proactive)...
Out of curiosity I procured my lab results from back then, and there was a barely positive ANA result. And my dad seems to vaguely remember the term lupus being thrown around, but this was 20 years ago and I know technology has changed a lot (and I was out visiting for the summer, yanno - custody and visitation stuffs).
Now things have popped up here and there over the years... I'm allergic to Neomycin (which has Sulfa - my ear infection doubled as did the size of my ear), I was treated once for Interstitial Cystitis, lots and lots of migraines, I can get heat stroke (which feels like sun poisoning), inflamed feet and joints when the podiatrist said there was nothing wrong with the joints themselves, I have tons of broken vessels/capillaries on my arms and legs, and a half-dollar sized heart shaped "hickey" on my right shoulder... and the fatigue... oh my. I can sleep and sleep and still need to sleep some more.
When I was pregnant my belly freaked out and was covered in rashes. I have so many issues with the lady bits...
Most recently, my issues have been with an inflamed gallbladder that's gallstone-less (2 ultrasounds and 1 HIDA scan, possible sphincter of oddi dysfunction?) and a pancreas that gets angry... When I mention lupus to my regular doctor she just looks at me.
I read that Cold Urticaria in teens can be considered a precursor to lupus as an adult. I know I must meet 4/11 criteria.
An ANA test in March was negative, Sedimentation Rate-Westergren was 2. Blood work from hubby's health fair in May shows Iron, Serum at 193 (scale 35-155) and Iron Saturation at 55% (scale 15-55 but I think this includes men and is less for women).
Now the migraines are back, and the upper GI stuff is acting up again, and I've been in the sun too much again, because it takes a day or two to get over the "hangover" (but no rash). I suppose I should see a Rheumy...
SO anyhow, thanks for listening and reading. I enjoy this forum very much and y'all are just sweethearts.