[Clare.T]

Welcome to the forum !
I wonder if you have seen a rheumatologist preferably one who is well versed in lupus
Diagnosis is done by careful consideration of all the factors - symptoms, health history and blood tests. In fact a moderately high ANA is all that is needed for a diagnosis of autoimmune connective tissue disease of some sort, not necessarily SLE.
If the ANA is below 1:160 it has less weight. Sometimes it's a question of eliminating the other causes of similar symptoms. I have the impression that testing every couple of months is a bit too short to expect to see much difference. The question is, what is the doctor looking for ? Or , what is stopping them diagnosing and more important treating.

Getting a formal diagnosis of SLE has serious implications for insurance.

Check out the criteria lists pinned at the top of not yet diagnosed and see what you can relate to

All the best
Clare

 

[Clare.T]

I forgot to mention that some nitpicky doctors won't diagnose lupus unless there is some specific lupus symptom but there are only four of those that's why an experienced and knowledgable doctor is important. The four are: two antibodies, anti ds DNA which maybe half those with lupus have and anti Sm which shows up in only one third of those with lupus; proven lupus skin problems and kidney disease are the two other specifics.
There is another diagnosis which is sometimes given when there are no specifics for any autoimmune connective tissue diseases, called undifferentiated connective tissue disease, UCTD. I am sure that many people with a lupus diagnosis could have been given a UCTD diagnosis by a doctor with different diagnosing habits. The main thing is to get the autoimmune CTD diagnosis as they are all treated the same.
Of course it is important not to be misdiagnosed too


Clare