Is there anyone out there who is living with Lupus ?

Have been diagnosed with Lupus in 2004 but never had any symptoms could it be something else they found? My ANA levels were really high over 800, I have no idea what this means, any ideas?

1.5 million Ameircans have lupus. I am one of them.

A diagnosis of lupus is based on
1. symptoms
2. history
3. wide variety of lab tests
4. after ruling everything else out

There is NO lab test for lupus. It takes many, many tests plus the process of elimination.

The ANA or anti-nuclear antibody test does not mean you have lupus.

10 million Americans have a positive ANA
1.5 million Americans have lupus
of the 1.5 million who have lupus 5% have a negative ANA
(this is from The Lupus Book by Daniel Wallace MD, one of the leading authorities on lupus)

Go see rheumatologist. You could have any one of the over 100 autoimmune diseases. Or you could have a positive ANA and no disease activity at all.

I am.

I'm one of the lucky 5% with symptoms but negative ANA.

ANA is abbreviation for anti-nuclear antibodies. Since Lupus involves your body producing antibodies against itself, it stands to reason that the more of these you have, the worse the disease should be. Unfortunately, it doesn't really work that way.

I have 'mild' disease because of the ANA result - but I can only walk around 20m, I use a stick because of the pain,use wrist splints, can't carry even a plate to table without pain and I haven't been able to return to full time work because of the illness. I work part-time (30hours) - any more than that and I need to sleep the whole weekend. My gums are constantly inflammed and bleed with hardly any persuasions (I can be sitting chewing a sandwitch and taste blood) and I use a special mouthwash to keep ulcers under control.

It could be lots of other things, my doctor tells me the ANA test is outdated and pretty useless and should never be used in isolation. If you've never had symptoms, I don't see how you could have Lupus since the diagnosis is dependant on symptoms and history. If you're taking medication, then your condition is controlled or possibly in remission which is different.

See your rhuematologist and discuss your CRP and ESR results. Get then to check your C4 too. Lupus needs to be very carefully monitored, if it isn't being monitored, get a new rhuematologist. It's a very serious illness if not monitored and controlled, but it mimics many other illnesses - just watch an episode of House MD to see how often it's misdiagnosed!

Told just one year ago that I have Lupus, but have had symptoms for years and also have been treated for years with spinal stenosis and degenerative arthritis. Two things doctors track with me, cbc (complete blood count) and ANA which I believe is a measurement of sorts for swelling, but I'm not 100%.