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Hi Charlotte

Please dont be too worried at this stage. Who was it that said you had Lupus? Was it your GP? Many times GP's are wrong about this as they are not specialists in autoimmune diseases and can mistakenly interpret blood results. There are no definitive blood tests for Lupus. Diagnosis is most commonly made by a Rheumatologist and involves a combination of blood tests and presenting symptoms. Have a look at the criteria list pinned at the top of the Not Diagnosed Yet Forum and see if any of them ring any bells. Its likely from what you say that your ANA (anti nuclear antibody) test was positive but this can be positive for lots of reasons other than Lupus.

At your first appointment you can expect the Rheumatologist to take a full medical history (and also family medical history is important too). For example is there anyone in your family with an autoimmune disease like Lupus, Rheumatoid Arthritis, etc? They will also ask you about symptoms you have been having so its a good idea to prepare yourself now and write down symptoms you have been experiencing over the past year or since whenever you remember starting to feel unwell. Dont leave anything out.

They will also most likely take a load of blood tests again, do a urine and BP test and generally thats about it. The only time I have been sent for Xrays is if I was particularly complaining about something like chest/lung pain. The first consultation usually takes a minimum of an hour to an hour and a half in my experience. Oh yes, they will probably weigh you as well.

Dont expect any answers on your first appointment. Most specialists take a very conservative approach and down play things until they have run their own gauntlet of tests. They will most likely make you a follow up appointment where they can go through the results with you.

If you are experiencing particularly troubling symptoms you might ask them about some form of symptom relief while you are waiting on your second appointment.

If it does turn out to be Lupus, please remember that Lupus affects everyone differently. No two people are alike. Some people run a very mild course with their disease with the minimum of medications and lifestyle adjustments. Others of course arent so lucky but there are a range of treatment options out there.

The good thing is that you found this site as early as you did. There is a wealth of advice and support here so dont hesitate to ask any questions in preparation for your appointment or afterwards.

Take care for now
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