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Old 02-05-2013, 10:22 PM   #1
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Anyone have experience with Lupus?

What was the diagnosis process like? I understand it can take quite a while and a LOT of testing to get a confirmed diagnosis. Is this your experience? What tests did you (or your loved one) go through?

My MIL tells us that she may have Lupus. I've done some preliminary research on it, but figured I would ask here anyway. She had some bloodtest done last week and essentially told us that the test came back saying she may have Lupus. She's supposed to go see a dermatologist in a few weeks...she's got a rash on her face and arms.

Any input would be helpful.
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Old 02-05-2013, 10:38 PM   #2
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My daughter is currently being tested. Her ANA came back positive homogeneous. We had her tested more than once with a month in between tests.

On Tuesday, she will see a rheumatologist. She has had numerous reactive disorders for years. Doctors have always looked at each thing individually. They are finally going to look at everything together. For instance, she has IBS, endometriosis, arthritis, headache flairs, and rashes. Those are the more pronounced symptoms. While I'm not happy with the idea of her having lupus, it will be nice to be able to put a name to things.

We've been told that there will be many additional tests in her future. I'm fine with that if it results in some relief for her.
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Old 02-05-2013, 10:51 PM   #3
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I was diagnosed with lupus 14 years ago. It does often take a while to get diagnosed. There are 11 diagnostic criteria and most rheumatologist will make a diagnosis if someone has at least 4 of of the criteria. I have very high ANA titer with multiple other issues. Lupus is different for everyone who has it and the degree of severity is different. Hope your MIL finds out something soon and feels better.
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Old 02-05-2013, 11:08 PM   #4
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I have discoid Lupus which means I have the skin rashes and positive ANA, but not any systemic involvement(yet). I have thyroiditis, sun sensitivity, and a few other things. I have blood tests once and a while to check for more evidence that things are worsening. Right now, all I have to worry about is wearing good sunscreen, so I'm lucky!
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Old 02-16-2013, 10:04 PM   #5
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I'm in the same boat! Went to a dermatologist because of a lump on my ear that was caused by a piercing. They did a biopsy showing inflammation so she did the ANA. Came back positive. My aunt has lupus and my mom plus all of her sisters have a type of autoimmune disorder. Going to see a rheumatologist soon. I have IBS as well.
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