Diagnosis of lupus without positive ANA?

I have recently been diagnosed with a "lupus-like connective tissue disease" due to symptoms and a positive ANA test.

My young daughter has very similar symptoms to myself, but although she has a high IgA (which may indicate inflammation, i believe) her ANA result is negative.

Given the family history, it seems likely to me that she has some kind of inflammatory problem. Has anyone had children diagnosed from a young age with these kinds of things, please, despite a negative ANA test?

7 Replies

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  • one of the problems with us diagnosed people is that we fear the disease hitting those close to us ..... I know that when my daughter had pains, I was forever sending her for tests, to ease MY mind. Since I have been blessed that neither of my children have tested positive, I do understand your concern and concern in turn leads to stress which in turn flares up your own problems. Please take care and indeed voice your concerns to your GP,

  • I am diagnosed as having an undifferentiated connective tissue disease/lupus as my ANA has always been negative but I have other markers/symptoms that suggest lupus. If you are concerned then it can't hurt to discuss these worries with your/her GP.

  • This is why terms like Lupus family or lupus spectrum come into play.

    What would have been a lock down diagnosis a decade ago can today be muddied by this or that specific test being pos or neg.

    Then again a decade ago far few doctors would have gone near lupus as a diagnosis.

    I was diagnosed with Lupus, then this was modified to sjogrens and anti-phospholipid sydrome with lupus like symptoms. Later it is anti-phospho with mild lupus... Easier to just say LUPUS. But would a pathologist agree?

  • Thanks for the replies - all very helpful.

    I am very new to lupus. I only went to get tested because of my daughter's high IgA and to see if anything going on with me could shed light on her symptoms!

    I have never heard of lupus spectrum or lupus family so I will look that up. Interesting to see that a diagnosis can evolve over time. My rheumatologist has said I have a "lupus-like" connective tissue disease, as although my ANA result is strongly positive, my symptoms could relate to a number of things. Watch this space I guess!

    Thanks again.

    x

  • Choc Teapot

    Your name is SO nice! I conjure up brilliant images of smooth, decadent chocolate flowing from a crystal teapot!!!

    Like Thaddeus, I was diagnosed with SLE 15 yrs ago, and then in April 2010 told by a physician other than my regular one, that he does not agree with the diagnosis of SLE, but would rather call it Connective tissue disorder. Poor soul, does he a physician not know that SLE and connective tissue disease /disorder is exactly the SAME thing!

    Don't let inexperienced(or experienced) medical people tell you anything- do your own research and do what your body prescribes. Lupus is such a difficult disease to diagnose correctly because it affects so many of the organs, and not always at the same time and with the same intensity, so by all means , do take something to relieve the pain and fever and everything else, but keep in mind these medications can be VERY destructive to your body. Request your dr to test regularly for blood disorders, effects on your skelet, effects on your eyes etc. I had to have lens implants in both my eyes, 3 major back surgeries and several minor procedures done to my back, 2 knee replacements and neck surgeries! I was put on ill health benefits from my very well paid managerial position and is now sitting at home- not able to work!All because of a dr that did not monitor my health through 15 yrs of treatment !

    Good luck!

    (and thx for the visions of chocolate!)

  • Dear Magda

    Thank you for the lovely visions you conjured up! :)

    I am so sorry to hear what you've been through. You are so right about doing what your body prescribes. I'm beginning to learn how important it is to trust your own instincts about things.

    Sending you lots of lovely choc and thanks again for your advice.

    x

  • Oh dear hun i am so sorry i was left it 5 years too :( xx

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