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positive Lupus screen (skin and eyes)
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Meg7417 posted:
My family doctor told me my lupus screen is postive and the titer (I'm not sure what titer means) shows it is affecting the skin and eyes. He ran the test because I was complaining of ongoing fatigue. I have a rash on both arms and dry patches of skin on my eyelids. I have not been able to wear my contact lenses for the last couple year because of dry, itchy, irritated eyes. When I talked to my doctor on the phone he said he thought it was not an accurate result and he didn't plan to do anymore testing, but he agreeed to refer me to a rheumotologist after I said I wanted to purse the diagnosis and more lab tests. I don't understand why he would think the result was not accurate. From what I've read online, additional testing is needed to get a clear picture of what is going on. Can anyone offer me some advice on what I should do next?
Thanks!!
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SafariMom responded:
Sorry to hear that you are having problems and a doctor that isn't determined to figure things out. I have learned that you have to be proactive with your health and be determined to help yourself make your own quality of life better. Do follow up with a rheumotoidlogist and get some answers. You may also look into (Google) Sjogren's symdrome. I have read that many auto-immune problems can go together, or one can be misdiagnosed as another. You may not have Lupus but this instead. Not sure exactly which titer test the doc did but sometimes the positive titer just means that there is whole body inflammation, which could be an auto-immune disease, like lupus. But there are also so many others.

Keep doing your research and being pro-active with your own health.

Good luck !

Bonnie
 
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lisatru62 responded:
Never let a doctor say there is nothing wrong with you. I went back and forth with my doctor for 15 years with complaints and symptoms. She got so sick of me she sent me to therapy because she thought it was all in my head and stress related.

Turns out I had Lupus for years and due to lack of treatment it has damaged my kidneys. If only she did some blood tests or sent me to dermatology sooner I might have been spared some of the damge.

Make sure you see the rheumatologist and maybe get a referral to a dermatologist. A dermatologist can look at the rash and maybe send a sample for testing.

Never let them tell you there is nothing wrong or maybe the test wasn't accurate. If it's not right they can always retest.

Good luck and stay strong.

Lisatru62


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