i think i may have lupus, been having health problems for years, really need advice.
I have been having health problems for years. I'm always "the sick one in the family" I have had extensive joint problems, they have always been diagnosed as torn ligaments, tendonitis, etc.
a few years back i noticed a weird red raised , very dry round patch of skin on my collar bone. about a week later i had hundreds of little red bumps all over my torso. I'm uninsured, so i never went to a doctor. they went away about 6 months later
then I moved to africa to do volunteer work (was there for 2 years) I kept having major health problems. My lungs were very weak, coughing blood up for about 9 months, and feeling SOOOO fatigued. I thought maybe i had gotten TB, because of working with HIV+ patients, many of whom had TB) I went and they did a sputum test, which came back negative. Over the next year my symptoms were just not getting any better. I decided to move back to the states. I went to numerous doctors and no one could tell me anything.
Finally, i was ironically at a routine dentist appointment, when they noticed on my xrays that i had some sort of "growth" in my neck" they sent me to a maxillofacial surgeon, did a CT scan, and found that my salivary gland along with many of the lymph nodes in my neck were completely calcified. They were concerned , because they said only a serious condition would have caused the extensive damage that they found. They removed my salivary gland and all the lymph nodes. They asked me had i ever been exposed to TB, because the pathology came back as "severe dystrophic calcifications" and "granulomatous lesions" and they said it was similar to the aftermath of an old TB infection. (they said another option was something lupus related, I explained about africa, so obviously opted for the TB explanation, they sent me to the health dept. did a ppd that was negative. they did another 2 weeks later which was borderline positive. I think 13mm? So they diagnosed me with tuberculosis and put me on 12 months of treatment. I've since felt much better, but still not 100% The dr at the health department was still feeling a little unsure about the diagnosis, b/c of the extensive pathology , to him, seemed like it would have been caused many years ago, not just a few years ago, when i was in africa. He didn't doubt that i necessarily had TB, just felt a little baffled by all these extra-pulmonary symptoms of TB. he said usually those symptoms are only shown in people with a compromised immune system. (like HIV infections) They did an HIV test which was negative. He still always felt unsure how my body could've been susceptible to such an intense TB infection as a 22 year old girl.
i still have joint problems, and have noticed a development of a sort of fat pad on the back on my neck? I'm not overweight, and found it to be linked sometimes with lupus.
I was also having some sort of health problems as a baby, which the doctors thought was meningitis, they did a spinal tap,etc. I've also read that meningitis is often a misdiagnosis linked with lupus.
I still have consistent issues with my joints. I also have such sensitive lungs. I spray painted some vases for my wedding a few days ago, (in a ventilated area) and for the past few days have had blood in my mucus. (both coughing up and when i blow my nose) My lung tissues just seem very week and damaged.
so, i'm just wondering am i reading into all this too much? I just keep seeing all these links between lupus and TB, and i'm just wondering what to do from here. I'm 27 now, I'm uninsured and i don't know if its worth it to even find out? would lupus always show up in bloodwork? how is lupus treated?