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triciaf
08-18-2006, 07:14 PM
Hello everyone - I need to know if anyone has ever had a negative ANA test and still been diagnosed with lupus. I've been to the Lupus Center in Pittsburgh, PA and they sent my blood to their own research lab. The ANA was negative and I'm being told all of my symptoms cannot be related to lupus. It just frustrates me so much. All I did today was cry. Not that I want this disease, but I would like answers. I am not on any immunosuppressants so I know that's not affecting the bloodwork. I so much identify with all you, your stories, symptoms, etc and maybe I just put the lupus "idea" into my head...I don't know, but right now I just feel like I have no where to turn. I was sure my answers were in Pittsburgh.

Anyway, any help, opinions, advice is appreciated as always. Thank you -

Tricia

Saysusie
08-20-2006, 07:38 AM
Hi Triciaf :lol:
When a person satisfies the criteria for systemic lupus erythematosus (lupus), but has a negative ANA, the condition is referred to as ANA-negative systemic lupus erythematosus. ANAs are negative in approximately 5% of patients with lupus. In these patients, frequently there are other antibody markers of lupus present, such as cardiolipin antibody, anti-smith antibody, DNA antibodies, and SS-A and SS-B antibodies. About 10% of these cases may eventually become ANA positive. High or low concentrations of ANA also do not necessarily indicate the severity of the disease, since antibodies tend to come and go in SLE patients. In general, the ANA test is considered a screening test and if SLE symptoms are present and the ANA test is negative, Lupus is not ruled out. What generally happens is: When the ANA is negative but the diagnosis of Lupus is still strongly suspected a test for anti-Ro anti-La antibodies may identify patients with a rare condition called ANA negative, Ro lupus. In most cases where doctors think a person with a negative ANA has lupus, that patient will have a positive anti-Ro (SSA), or various other antibodies. A positive anti-Ro is most commonly associated with Sjogren's syndrome, but is also not uncommon in almost any connective tissue disease.
I hope that I've answered your question. Let me know if you need any more information.
Peace and Blessings
Saysusie

MARYCAIN
08-20-2006, 11:33 AM
like Susie explained, it's certainly possible to be diagnosed with lupus with a negative AnA, but many docs are reluctant to do so. The problem with ANA testing is it's a screening test, so if it is negative, many labs just stop there and don't run a full antibody screening panel unless your doctor specifically requested it. Do you know if your doctor ordered a complete panel? There are also other lab tests which can be altered in lupus or other auto-immune diseases - kidneyfunction, sed rate, complete blood count, and complement levels. Your doctor should perform all these tests before ruling out a diagnosis of lupus.

Lupus is hard to diagnose because it can look like so many other diseases, and it isn't unusual to take several years and multiple doctors to get a definite diagnosis. I know it is frustrating and scary, but please don't start thinking this is all in your head - it isn't. There is an answer out there, and you will find it eventually.

Lupus can affect every organ and system in your body, and cause a lot of weird symptoms they don't describe in the medical tectbooks, so don't think you are crazy if your symptoms seem strange or don't match other people's. For example, for years I got red, itchy blotches and hives if I got into a really hot shower or bath - my GP told me it was psychsomatic. This started years before I developed any other lupus symptoms. When I mentioned it to my rheumie, he told me it was actually pretty common in lupus patients because our skin is hypersensitive to heat, sunlight, etc. He prescribed a histamine blocker - instant relief! So don't buy it when a doctor tries to tell you it's all in your head when it's really in your body.

triciaf
08-20-2006, 08:36 PM
Thank you Susie and Mary for your replies. From what I'm being told I don't have any of the anti-DNA antibodies either or any other lupus "markers" except high sed rate and CPK. My issues must be from something else. Everytime I get a rash, mouth sore, etc I'm always showing my husband so he can be my witness to atleast some of my symptoms! I'm going to keep researching in hopes of finding an answer somewhere.

I do thank you for your knowledge and advice. I wish you all the best.

Tricia

MARYCAIN
08-21-2006, 07:21 AM
High sed rate usually indicates some kind of active inflammation, and high cpk can occur with muscle damage, including damage to the heart.

Tricia, remember that not having lupus doesn't mean you don't have some other auto-immune disease causing your symptoms, Has your doctor ever mentioned the possibility of dermatomyositis, a disease in which the immune system attacks the muscles and the skin, or polymyositis, a disease in which the immune system attacks the muscles? High cpk levels can occur in both these conditions, and like lupus, they can cause fatigue, rashes, muscle pain and other symptoms.

If you are not satisfied with your doctor's efforts to diagnose and treat your problem, you need to let him know. Stand up for yourself and your knowledge of your own body!