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Thread: i think i may have lupus, been having health problems for years, really need advice.

  1. #1
    Join Date
    Jan 2013
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    Default 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?


  2. #2
    Join Date
    Aug 2011
    Wellington, NZ
    Thanked 34 Times in 28 Posts


    It's definitely worth figuring out!

    It's hard when you're unsure of what the issue may be, but try not to focus too much on either option.

    Lupus doesn't always show up in blood work. To complicate things there is no yes/no test for lupus. Doctors have to piece together evidence from blood work along with the symptoms you present with and a full medical history. There are some good sticky posts in some of the forums (sorry, not a technowhizz, have no idea how to link to them, perhaps someone could help?) that explain more about how lupus is diagnosed.

    There's also info about how it is treated - it varies from person to person, there is no standard form of treatment reaallly. Some people respond well to NSAIDs, some need corticorsteroids, others go one to need stronger immuno suppressive stuff.

    Have a look around too, there are lots of posts that explain how to try to prevent symptoms flaring if it is lupus (staying out of the sun, not over doing it etc.)

    But definitely get it checked out - we are not doctors, we can only advise.

    Best of luck
    I spent 2 years travelling Australia. Check out my travel blog at

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  4. #3
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    I wanted to stop in and welcome you to WHL. As was mentioned above, there is no actual test for lupus. It is a waiting game of bloodwork and symptoms to line up after all other possibilities have been discounted. Heck, half the time it is simply that all the other options have been discounted (only half joking there).

    The problem is that lupus symptoms mimic so many other things that it is so hard to tell if it is Lupus or one of many other things. I do agree that you need to keep pushing and find out what is going on. Coughing up blood is not something to take lightly and you have dealt with this for too long.

    we will be here with you while you travel this path. Please make yourself at home and welcome to our family

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

  5. #4
    Join Date
    Mar 2011
    pinjarra, western australia
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    we are not doctors...... but we are all patients.

    if i was in your situation.... i would go to a speciaist called a rhuematologist.

    whilst i was there, i ould hand him a piece of paper with my basic medical hystory written down.
    something like you have written above.

    if it is autoimune, and it does sound like it could be, a rhuematologist is the expert in this field.
    unfortunatelly many of us have found they are not always as confident as they should be.

    please keep us informed as to what you decide, and what steps are taken to discover your ailments.

  6. #5
    Join Date
    May 2010
    Thanked 312 Times in 251 Posts


    There are vascular diseases similar to what you describe also, that can involve joint pain and fatigue. Lupus can attack the vascular system, of course. It's difficult to get anything diagnosed at an ER, but maybe there's a free clinic somewhere close to where you live? Did you do nose bleeds as a child, and then grow out of it, then start back up?
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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