Why are my lupus tests negative?

Hello, I wonder why all my lupus tests (ANA, double stranded DNA, AST) come negative. Several years ago I had "butterfly rash", since then low WBC (on and off); now I have protein in urine and a lot of kidney and lung pains, shortness of breath, muscle pains, and neurological symptoms, headahes, extreme light sensitivity and fatigue. Last fall and winter I had what seemed like acute inflammation of all blood vessels (never picked up by tests) and a blood clot (aknowleged by the Dr.) How can I get a diagnosis to convince my Dr. I have lupus? When I had a butterfly rash (for ~ a month), I had no idea what it was. I thought it was allergies, and didn't see a Dr. (My family remembers it very well). But my Dr. only believes ANA test, which was negative.[/list]

I am having the same dilema, I think there a few more tests that can be done for me, but it is convincing the dr. to go for them. I have practically all the symtoms for lupus minus the hair falling out, and also sjorgrens symptoms too. They do want me to get a skin test, but I hear that they are not 100 % conclusive as well. The only good thing is the last Rheumy I went to, did prescribe plaquinil, and my eye dr, plugged the lacrimal ducts and put me on restaisis. I do have a bit more energy. I feel when I have to go back with my rhuemy for a check up that she won't pull me off of the plaquinil. I am also very allergic to Sulpha. It is so frustrating not to really know because of the testing.

Don't give up with the testing. If you truly feel like you have Lupus, continue to have the tests no matter what the doctor says. Go to another doctor. Is this an Internal Medicine doctor? They usually are very thorough with testing. A friend of mine has an aunt who has all of the classic symptoms of Lupus and she kept getting negative test results until the last time she was tested. Now the doctors are treating her as a Lupus patient. I really believe that you can have Lupus and still have a negative test reading especially in the beginning stages of the disease. Doctors are not Gods, they don't know everything. You have to be the aggressor in your case and insist that they keep running tests. You may use my story as a guideline. I am actually in the same situation as you too. Last year I was tested for Rheumatoid Arthritis and had a negative test result. I am convinced that I have it or Lupus because I have all of the symptoms. I will continue to insist they run test on me every couple of months. I do know that if you have a positive ANA result that means you have SERO POSTIVE Rheumatoid Arthritis. There is such a thing as SERO NEGATIVE Rheumatoid Arthritis...which basically means you have RA but it doesn't show up in your blood. You need to ask your doctor about that as far as Lupus goes. It may be similar. Good luck to you!

I've have all symptoms of lupus and macular degeneration was diagnoised by dermatoligist for discord 4yrs ago, but when I remember I beleive I've had lupus for 6 years now, my problems seems to be my doctors, they seem to just not beleive me, my doc of 30 yrs is just pissin me off by now, I'm looking for another doc who is knowledgeable about lupus. he just wants to give me a prescription and send me on my way, last time I was there, I was telling the attending nurse why I was there, and she just looked at me and said WHAT, WHAT LUPUS, I just could'nt beleive what I was hereing her say and the look on her face, like this was the first time she was hearing this, mg she has 30 years of my records in her hand. I just was flabbergassed.My symptoms started 6 years ago, doc said rash on my face was allergic reaction to berrys, next time said was infection, next time said maybe rosesca,next time sent me to dermatoligist, by now its been 2yrs, I kept telling him about my extreme fatigue, no energy,joint pain muscle pain, blurred vision,chest pain he keeps telling me its just old age, or I'm over worked, now I have pluristy, Im tried of doing his wait and see approach. 2006 blood work was ok, but he wont order more.every year that goes by I just get worse. Dermatoligst had biopsy, came back positive for lupus dicord, I beleive I now have sle lupus as well. Only on nsaid. but not helping me Im in pain all the time, there just doesnt seem to be any remission for me.Just came from my optical doc for black spots in my central vision he did eye pictures and said there are spots on my retina but couldnt tell me what they were, just said I must have had an infection as a child,said come back in 3 months and we'll look again, I asked him about the black spot Iam seeing and the floaters and halos in my vision that can last for 2 hours, he said I've never heard of them lasting that long and its just old age, you see my frustration here. I know my body and family histroy tell me why they just act like they dont beleive me?

I was diagnosed with SLE in 2001 after suffering from severe edema to my legs, feet arms and belly. I also had joint pain an fatigue. I went from doctor to doctor and was told there was nothing wrong with me. I finally went to a rheumatologist and as soon as she took one look at me, she said "you have Lupus". I had the traditional butterfly rash (which people assumed was too much makeup or too much sun). The lab work confirmed the diagnosis. I was placed on antimalarial medication and NSAIDS for pain. The NSAIDS did not work and the pain got worse. I am still suffering with swelling to my entire body and pain and fatigue. I see my rheumatologist every 6 weeks and each time she tells me the blood work shows that I am in remission and that I should be feeling better. I do not feel better. I feel worse every day. I am so frustrated. People tell me that the pain is all in my head, but it is very real and so is the swelling.

Guest wrote:

I was diagnosed with SLE in 2001 after suffering from severe edema to my legs, feet arms and belly. I also had joint pain an fatigue. I went from doctor to doctor and was told there was nothing wrong with me. I finally went to a rheumatologist and as soon as she took one look at me, she said "you have Lupus". I had the traditional butterfly rash (which people assumed was too much makeup or too much sun). The lab work confirmed the diagnosis. I was placed on antimalarial medication and NSAIDS for pain. The NSAIDS did not work and the pain got worse. I am still suffering with swelling to my entire body and pain and fatigue. I see my rheumatologist every 6 weeks and each time she tells me the blood work shows that I am in remission and that I should be feeling better. I do not feel better. I feel worse every day. I am so frustrated. People tell me that the pain is all in my head, but it is very real and so is the swelling.

***God bless, I feel your pain...take pictures of your swelling & take them in with you to the Dr. next time you go...thats the only I could make the dr.'s believe me!!!!!!!!!!!!!!***

Diagnosed in 95 when kidneys got involved. Had all the symptoms; some + blood tests. I have almost every manifestation to some degree -Sjogren's, Raynaud's, joint pain, FIBROMYALGIA, fatigue, malar rash, microsopic colitis, kidney disease, and depression. Some come and go; most are constant. I can't take most NSAIDs due to allergies, so I'm on Methotrexate, Plaquenil, Salagen, and various anti-depressants. I also have sleeping disorders which makes everything worse. I can't drive over 30 minutes because I fall asleep.

NOW I have swelling. It is most evident in my feet, ankles and calves up to my knees. But now I realize it is all over and that is why my pants are tight. I've gained 20 pounds in the last 6 weeks without changing my diet. Only change is not being able to walk much because my feet are so painfully swollen. I can't wear my own shoes. I have seen my Rhuemy, Internist, and cardiologist. Had CT of chest and abdomen, sonogram of legs, and an echocardiogram. All negative, but at least the symptom is obvious so I can't be told it is all in my head. Early on I was told to see a shrink - "nothing was wrong with me."

Most doctors don't have a clue. For instance, when I started having colitis, my Dr. (world renowned specialist) told me it had nothing to do with Lupus, even though I told her my symptoms were directly related to my time in the sun. A few months ago I attended a lecture on "Lupus & Gastrointestinal Manifestations." I could have told them 10 years ago!

Stand up for yourself. MD's don't know everything, most of all, your body. You know when something is wrong - we are not hypochondriacs. You are responsible for your own health. Don't depend on anyone else to keep track of your disease.

Anyone have any answers about the swelling? What causes it? How do I fix it?

My grandmother was told she DIDN'T have lupus repeatedly over the years. After she passed away, results showed they were wrong.

My family is going through the same thing as you. You're not crazy. Try to find a doctor that will listen. You might have to go to 100, but for your peace of mind, do it.


God bless you.