I am a tab bit desparate and hope someone may be able to help me. I am a fourth year pharmacy student, I am 23, and I have felt crappy for longer than I can remember. Recently (months, not weeks), on a visit to my PCP, I showed my doctor a picture of a weird rash I had been getting on my face for years. I had never thought to take a picture, but when she looked at it the first thing she said was "have you been tested for lupus?"
First things first:
I have had migraines since i was in fourth grade, and I have always had a love/hate relationship with the sun and break out in hives/feel ill after spending time outside in the warmer months. Additionally I have been anemic for the last 10 years. My iron levels are lower limit of normal with taking 83mg elemental iron daily, but if I miss doses or stop taking it my levels tank. Ferritin was initially low (it was 2) but has also normalized with continued iron. I have also had many weird health changes in the last few years. It started with reconstructive jaw surgery, which was unpleasant to say the least. Next (about 6 months later) I came down with strep, and then never got rid of it (had it for about 3 straight months). My tonsils were so large I would choke trying to eat and after 6 courses of antibiotics, finally had them removed. Fast forward another 6 months and I get a sinus infection that turns into bronchitis, for which I got another round of steroids and antibiotics. This didnt help and so starts my second round of months of being ill. In the last calendar year I have had 5 URTIs (3 in the last 4 months), 3 UTIs, strep, influenza, pneumonia, been officially diangosed with asthma (which is still very uncontrolled), had to get glasses, and began randomly bruising all over my body. Yet another mystery: when I get sick, I don't ever pass on what I have to other people. I know that I work in a health care setting, which exposes me to a wonderful cocktail of pathogens, but this has been the case for years longer than I have been having these strange "symptoms."
Next:
My doctor ordered an ANA and was positive with an "atypical speckled pattern," which titered to 1:1280.
I was referred to a rheumatologist and it was the worst experience of my life. I work in a hospital and frequently round with the critical care team, so I would not say that I am healthcare naive. That being said, this doctor was the worst physician I have ever met. She did not listen to anything I had to say, was unprofessional, at a point overtly rude, and either refused or didn't know the answer to any of my questions. I had a workup for which all ENA test came back negative. My IgG levels were really low, my c-reactive protein level was more than triple the upper limit of normal, and my ANA came back positive again titered to 1:1280. My WBC and Neutrophils were also high. I recieved a letter from her saying she could not diagnose me with anything at this time, but that she did consider my rash a classic lupus butterfly rash.
Pearls:
I have been having chest pains in the last few weeks- it is not a tightness like i have experienced with pneumonia or bronchitis or asthma, but rather a sharp pain around my sternum when I bend over, hunch my shoulders, life anything heavy, or breathe very forcefully (like you would for a PFT). It feels like a muscle pain, but only around my sternum. I have no idea if it could be related to anything but my troponin and D-dimer levels were tested in april when i was having chest pains during pneumonia, both of which were negative. I feel as if I am wearing a suit of lead all the time. I have new onset (in the last year) motionsickness/vertigo, I am slow to move, often slow to think, and have not had a good night sleep in months despite a trial of trazodone and ambien. I have been having joint pains that are red and warm to the touch, and I have a family history of autoimmune diseases (paternal grandmother and aunt have MS, maternal aunt has RA) and had two MRIs, a CT, and 5 sets of chest X-rays in the last 6 months. Other than finding out I had pneumonia and chonic sinus disease, nothing has given me answer answers. From my own experience I believe that I have 4 of the 11 criteria (anemia, photosensitivity, positive ANA, and butterfly rash), but if all of my other labs have come back negative, could SLE still be a possibility for me? Is that even possible? I know there is no way to definitely diagnose lupus, but I dont feel as if anyone is listening to me or cares that I have concerns and feel like dirt. I have been trying to get appointments to other rheumatologists, but every place I call dissmisses me and tells me to follow up with MY doctor. not to mention everywhere has a +4 month waiting period for new patients.
If you have any advice or thoughts they would be greatly appreciated. I feel miserable, I look chronically sunburned, and I just want some answers.