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Hi chelle,

I'm sorry your rheumy appointment has left you feeling confused and dejected.

Getting a diagnosis is for most 'patients' a big validation and gives the idea of certainty. But in reality it is just slapping a label that kinds of fits onto a set of problems. What actually matters is the decision about what to do about your symptoms (the treatment). Your doctor has started you on plaquenil, which is the best medication to try to begin with. It is pretty safe and for most people with lupus and related connective tissue diseases is all they need. The fact that your doctor acknowledged that there is something real going on and started treatment is actually as good as a diagnosis. If it makes you feel better, just tell yourself you have lupus. In all probablility this will become official at some point in time, or something simmilar (UCTD for example).

So, if I were you, I'd stick around here, and if you want to join a local lupus support group.

The ANA being negative this time is a bit frustrating re diagnosis, but it certainly doesn't mean you aren't sick or should expect to feel fine straight away. It isn't related to disease activity, and if it has been tested once and found positive, future readings can't negate that. Doctors (and patients) like to see the positive ANA, but no one should ever discount your symptoms or withhold treatment on the basis of this one test alone.

All the very best,

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