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Positive Lupus Tests, Lupus Symptoms, But Wait?

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Old 10-13-2012, 07:18 AM   #1
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sajehill HB User
Positive Lupus Tests, Lupus Symptoms, But Wait?

I am 58 years old. Arthritis ... both rheumatoid & osteo ... was/is prolific in my mother's side of the family. Her mother (my grandmother) & some of her siblings had it, my mother had it, many of her sisters & brothers (my aunts & uncles) had it, many of their children (my cousins) have it, & my brother has it. One of my aunts had lupus. I was diagnosed with osteoarthritis in my back in the early 2000s but I am not bothered by it to any extreme degree.

I have been diagnosed with Hashimoto's & have a psoriasis flare every now & then.

For the past year & a half I have not been feeling well. I have extreme fatigue, memory problems & brain fog. My eyes are very sensitive to sunlight. I have depression. I have painful joints (hips, back, neck). I have been losing my hair & I have been diagnosed as anemic. I have bouts of headaches from time to time. My doctor has done test after test & nothing shows up. In August she finally did a lupus test which came back positive. She said we could not base a diagnosis on this one test however ... I would need to see a rheumatologist for further testing & evaluation.

I saw a rheumatologist this month who I was told was at the top of her field. She barely examined me, didn't pay any attention to the notes I gave her regarding my symptoms, & ordered a bunch of blood tests & a urine test. Once again the lupus testing was positive. However, she said tests are sometimes false positives & therefore we are going to do nothing right now. I need to come back in 3 months (January) to have the testing done again.

I do not understand this. I have many symptoms. I have other autoimmune diseases. I had a positive lupus test in August & now positive tests in October ... but these could be false positives so I need to have the tests done again in 3 months? How many times do tests need to come back positive before they are taken seriously?

I am thinking about seeing another rheumatologist for a second opinion. Should I even bother?

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Old 10-14-2012, 06:03 AM   #2
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Re: Positive Lupus Tests, Lupus Symptoms, But Wait?

Hi... I am going to my 3rd rheumotogist in Dec. I am just like you. 1st test showed positive ANA low with high RNP's. She told me to wait 3 months and I went back and she was very nasty. So I found another one, was retested and again had a positive ANA and my rnp's went up also. Still on the low side too. That doctor was a bit too aggressive for me. Wanted me to get scalp biospy, full lung cat scan and functions and he wasn't even sure if I did have lupus. Went to my dermotogist been seeing him for over 15 years so he knows me well) and told me he would not perform a scalp biospy due to he is almost sure I do not have lupus. So now I made another appointment in December after speaking to my regular gp. I have had pain for on and off for the past 2 years but this past March it got much worse. I was diagonsed with fibro and I also have bad DDD. Sometimes it is a very long waiting time but I want them to be sure about the lupus. I have been taken Plaguenil only 10mgs but feel no different. So I will wait for Dec. and meanwhile keep up on my blood work. Good luck to you.

Old 11-03-2012, 09:11 AM   #3
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Re: Positive Lupus Tests, Lupus Symptoms, But Wait?

Hi Hon. I can see you are having a very difficult time. I am not sure which blood tests they did. If it is a positive ANA, then that is an indicator of an auto immune disorder, depending on other tests and symptoms a diagnosis of whichever disorder it is can be made. If it was the Lupus Anticoagulant (LA) blood test and it has been possitive twice, then that is a positive test for Anitphospholipid Syndrome. With your symptoms this would seem probable, but I cant say till I know what tests you had done. This Rhummy sounds awful....and yes.. yes.. yes, I would get another opinion. Before you go to it you must arm yourself with knowledge. I would first advise you to go look at the Hughes Syndrome Foundation web site. Anitphospholipid Syndrome (APS) is known as Hughes Syndrome in the UK. This site will explain everything about APS, APS and Lupus are often linked. There is lots of information and links on this site that will help you. Auto-immune disorders often cross over and you sound as if you also may have problems with your thyroid as well. Thyroid UK is a good site to look at. I went to numerous specialits over many years prior to my correct diagnosis, all who mis-diagnosed me, treated me terribly and as a result I almost died. I had two strokes and lost the sight in one eye due to incompetence. My sister died from APS/Lupus because of negligent doctors who continuously mis -diagnosed her. Now I respect my doctors only if they respect me. Change until you find one you feel safe and confident with. I now have a wonderful specialist and a reasonably good GP. There are good doctors out there, you just have to find them. Also take someone with you to your appointment. Ask them to write down what doctor said and to promt you if you forget to say something important. Bring all your lab results with you. Chart all your symptoms and any questions you want to ask. I wish you well. Jane xx

Old 11-04-2012, 03:39 AM   #4
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Re: Positive Lupus Tests, Lupus Symptoms, But Wait?

Sajehill, hi. I'm sorry for your symptoms & your struggle for clarity. I'm only a patient, but I suspect it's MUCH harder for a doctor to sort thru NEW things when you ALREADY have RA, psoriasis, and and Hashimoto's thyroiditis. From what I've read, here are a few possible reasons why:

There is no such thing (unfortunately) as a "lupus test". Instead, there are 11 established criteria; and generally (not always) you must meet 4 or more of the 11 to be diagnosed. Those criteria may be found in the "sticky posts" (permanent info posts) at the top of the thread list. Once each is met, it should be considered permanent, as though checked off in indelible ink.

Nonetheless ANA is sometimes erroneously called "the lupus test". That not only ignores the criteria (per the paragraph above), it ignores all the OTHER conditions in which ANA may be positive. Worst of all, I believe that list includes the three you already have, i.e., RA, psoriasis, and Hashimoto's!

Also, symptoms overlap greatly across lupus and some other conditions. For example, fatigue, memory problems, and brain fog are certainly seen in Hashimoto's. Joint pain is seen in RA and Hashimoto's. (Etc.!)

So I suspect what a specialist might look for first in a patient like you---rightly or wrongly!---would be things seen ONLY in lupus. Looking thru the 11 criteria, there are a couple that seem to be PARTICULARLY lupus-oriented. For example, of all the autoantibodies possible in lupus, two, anti-ds-DNA and anti-Sm, are considered pretty much unique to lupus.

Another example would be a *lupus-specific* rash. The criteria only include two particular rashes: malar (buttterfly) rash and discoid. However, there are perhaps a dozen or more other lupus-specific rashes. The only way to PROVE a rash is lupus-specific is deep-punch biopsy coupled with immunufluorescent stain tests, b/c the stain tests can reveal linear "bands" considered unique to lupus.

In your shoes: I'd ask for copies of all recent tests, to see which tests have been run. i.e., were tests more specific than ANA run?

For your rashes---and I don't mean this offensively---are you SURE your rashes are really psoriasis? I say that b/c there's a lesser-known lupus-specific rash called "SCLE psoriasiform" (a/k/a "SCLE papulosquamous") that very much resembles psorasis to the naked eye. This rash tends not to scar or depigment (but I assume it can in some people); it tends to be very photosensitive (UV-induced); and it correlates heavily with the anti-Ro (SS-A) autoantibody.

For your RA diagnosis---and again I mean no offense---how was it diagnosed? I don't believe pain alone, or even certain lab results, can distinguish RA from lupus. Instead, I think RA has its own rigid diagnostic criteria. Also, I think if erosive damage is seen on X-ray (something that looks like "mouse bites"), that points more to RA than to lupus.

I hope you post more soon. I know there are people here with multiple diagnoses; and I know there are people here with first-degree relatives who were dx'ed with autoimmunes, sometimes the same one(s), sometimes different ones. But whichever group you eventually land up in, you'll for sure find kindred spirits here! Bye for now, with all my best wishes, Vee

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