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How likely is it to be lupus?

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Posted 9/28/2007 2:45 PM (GMT 0)
I'm a 19 year old caucasian female. I've been tired constantly for the past five-ish years. Besides that, and frequent headaches, I don't have any other symptoms.

I tested positive for ANA 1:160 (tested twice with the same result). There is also, apparently, blood and protein in my urine. I had some more blood taken today but won't receive the results for another two weeks.

Probably unrelated but I also might have high blood calcium (was high in one test, normal in the other) and low parathyroid hormone.

My first cousin once removed died from Lupus around age 30. My first cousin two times removed also has lupus currently. My mother has symptoms of lupus but has never tested positive for it.

Given my ANA and my family history, but despite my lack of symptoms, how likely is it that I have lupus?
Posted 9/28/2007 2:53 PM (GMT 0)
Hi Pupil:

First welcome to our forum you'll get loads and loads of good information here and meet many great people.

First off take a deep breath and try to relax. The fact that you don't seem to have to many of the symptoms of lupus is a good thing. Just because you've got a family history of lupus and a positive ANA doesn't mean you've got lupus or that you'll get it. I've got lupus pretty bad and my 14 yr old daughter has had a positive ANA since she was 3 at 1:640. She mentions some muscle pain and get rashes, but she still doesn't have lupus. She needs to be watched and have her blood checked but so far no lupus.

The blood and protein can be from other reasons so, don't jump to lupus straight away. I'm sure this is scary for you with your family history. Try to remember that lupus varies from person to person. Some people with lupus never need medication and their lupus is very mild, to people who are severe and very sick. It just depends on the person and their treatment plan. I've had lupus for 19 years now and the first 14 weren't to bad. Yes, I'm very sick now and take tons of meds, but I've got other issues as well and my two diseases feed off of each other.

Try looking at the website lupus.org and see the criteria that you must meet 4 out of the 11 to get a diagnosis of lupus. I hope this help some, good luck to you and let us know how things turn out.

Take care,
Barbara
Posted 9/28/2007 4:21 PM (GMT 0)
Hi Pupil, and welcome. It's very easy to get too worried when you aren't feeling your best. The fatigue and headaches can be symptoms of lupus, but they can also be symptoms of many other things. I can understand your worry with the family history you have though. Barb is right, many people exhibit several things like the positive ANA for example, and never actually have lupus (especially in families where AI disease is present). This is a very tricky disease. Try to give yourself a break until you get more info. back from your doc. There's really no way at this point, anyone could tell you whether you have lupus or not. Take care and good luck,
Posted 10/1/2007 2:53 AM (GMT 0)
Have you seen a nephrologist?  Blood and protein in your urine indicates some kind of kidney involvement and should be examined.  It could be lupus and given your family history it is possible but it could also be something else.  Proteinuria is common in lupus patients and that is what is causing your kidney dysfunction.  Do you also have edema in your feet/ankles/legs?

For most proteinuria is easily treatable with ace inhibitors.  I have it and it has been completely under control for 2 years.

I would also get a second opinion from an experienced rheumatologist. 

Bill

Posted 10/1/2007 2:46 PM (GMT 0)
Hi Pupil, I also wanted to welcome you. It's hard to tell if you have lupus or not, but you definitely have something going on with all of your symptoms and with the abnormal labs. I agree with Bill about seeing a nephrologist to get to the bottom of the blood and protein in your urine. We've had members here whose nephroloists have helped them get a diagnosis. It's interesting that you mention the high calcium and parathyroid because my pcp tested me for that when I was going through the whole diagnosis run around. She said it could cause a lot of the pain and fatigue I was experiencing. My calcium was borderline high, but my parathyroid was fine, so it turned out all of my stuff ended up being lupus related. Don't stop looking until you get answers and effective treatment. Many of us have had to go for second, third and fourth opinions before we found a great doc. Let us know if you have any other questions. Take care and I'm glad you joined us.
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