View Full Version : Doctor says I have lupus.....but I'm not convinced.
08-07-2007, 09:28 AM
My primary doctor sent me to a rheumatologist a couple of years ago b/c I had a rash all over my body and a positive ANA test.
The rheumatologist did further blood work and I had a very high dsDNA test result. The rash turned out not to be lupus related. He says I have lupus based on the dsDNA test. I feel fine. I do get tired at times, but who doesn't? I do get mouth sores sometimes, but I have no other lupus symptoms. I don't have "flare ups". But I have had a high dsDNA test result consistently for the past 2 years. (He checks me every 3-4 months.)
Last year he also diagnosed my with Sjrogren's syndrome based on a mouth biopsy. I do not question that I have Sjrogren's.....but I do the lupus.
How can you have lupus and feel so good? Is there something else that causes a positive dsDNA test result besides lupus?
08-09-2007, 11:05 PM
Same thing happened to me in 2000. No symptoms at all, but very high ANA and positive smith's. Rheumatologist prescribed Plaquenil in 2003 after monitoring ANA and numerous other tests - got it filled twice but never took it. Why should I if I felt fine?
Over the past 2 years I have gradually experienced joint pain, Raynaud's and now vasculitis and rashes. And my lab results are the worse they've ever been. So unfortunately, I started taking the Plaquenil this month. Hopefully it will help...
I hope you continue to feel good for a long time....maybe I was just in denial , but trying to stay positive....
08-10-2007, 08:23 AM
When I was diagnosed I was feeling just fine. The only reason I went to the doctor was because I was swelling a lot, for no reason. I didn't even have ONE of the symptons on the list that they have for "Do you have Lupus" It was really strange... It still is really strange, because I know for a fact now, that I do infact have Lupus...
Please take what your doctor says, and take what your doctor gives you. I went into denial and stopped taking my medicine because I felt my doctor was wrong. I felt just fine, and he diagnosed me with this HORRIBLE disease, and then when I took the medicine he put me on made me sick... So, being a smart 15 year old... I stopped taking my medicine. I ended up in the hosptial for almost two weeks. I was a sick, sick little girl...
So, I pray your doctor is wrong... But, just take what he says very seriously!
08-10-2007, 09:16 AM
Thanks so much for the advice. I guess I should just accept what he says and be thankful that I don't have any more syptoms yet. I must confess that I have wondered (worried) if the lupus is doing something inside of me that I don't know about yet b/c I have read it can affect your heart, lungs, kidneys, etc. There sure is a lot to this disease!!
08-10-2007, 09:33 AM
Yeah, there's A LOT! I'm still learning about more, and more things daily. I'm coming up on eight years of living with this disease.
I have Lupus Nephritis. Thank GOD, I don't have more renal problems than I already have.
Just stay strong, stay focused, and you can beat this stupid disease!!