Why are my lupus tests negative?

This blog has given me the hope. I am not alone. I began having symptoms seven years ago and was diagnosed with angioedema. It went away for a year or so, and I completely disregarded that point in my life. Then it began again with a vengence. This time it wasn't limited to my eyes, but all over my body-just different sections and sometimes multiples at the same time. Then I also began having severe urticaria, so I was diagnosed again with severe urticaria and angioedema. Multiple allergy tests revealed I was allergic...to everything. None of the specialists, but one, felt the angioedema was related to the allergies. My lips swelled, so I had to go to the ER. I had a photosensitive reaction that completely covered my face with bumps and swelling while out on the boat, so I had to go to the ER. Every time I am immediately given a strong steroid, strong antihystamine and then they begin watching the clock. The antihystamines do nothing for me, so you can imagine the puzzled looks from the many ER doctors when my swelling stands proud. Bright light bothers me terribly now, and I have headaches on some days. I barely go one single day without a bump, or angioedema on my body. I sometimes have sores in my nose, so it bleeds at random. Yes, it's awkward in a meeting, so are the giant fire red bumps and swelling. The swelling in my ankles and hands are the worst =( I had my very first malar rash that began last night. I went to the Dr. today just to make sure I wasn't mistaken. I was not. My female Dr. scheduled me for a common procedure last year, and in pre-op he discovered a heart murmur. This was new. Two EKG's later, I definitely have a change in my heart. I am in my 30's. I am currently on the heart monitor and should have results next week for the latest status. My lung volume is excessively low and never above 80. I get white finger tips and toes in cold weather. I've had a knack for infections since I was a little child, and my brother was always so healthy. My hair is half as thick as it was just 3 years ago and I currently use the clear little tiny bands meant for children. The pictures are undeniable from then to now with the hair loss. And I'm just plain tuckered out some days. $8,000 in medical bills later, I have diagnosed angioedema, severe urticaria, terrible lungs (non smoker), heart murmur, low C3 & C4, and a NEGATIVE ANA. Ibuprofen causes my hands to swell like little sausages, sulpha drugs cause heart palputations and rashes, and latex irritates my skin for days after contact. All symptoms lead to lupus, but the FDA says NOPE, because my ANA is negative. Don't get me wrong, I fought the lupus diagnosis from several different doctors previously, but the confirmed malar/butterfly rash that is burning on my face currently makes me think further. It must be lupus, because if not, then what else??? I'm seven years into this. My doctor shared a story about a woman who went through something similar to my story for 15 years, until the FDA released new panels that put her into that category, and she became the "appropriate age"! I cannot do that. This is emotionally and financially draining, but it is also humiliating to go in public some days. I feel like I now plan my life around "what if I have a flare up". When I travel in the summer, I have to pack long sleeve emergency outfits for functions I absolutely cannot avoid participation in. So, I'm literally the ONLY person covered from top to bottom in hot weather, and that sure doesn't make my skin feel any better, or help my mood. Please, if you have any suggestions on new blood panels, etc., I will be eternally grateful. 

Quit the plaquinil! I was diagnosed with Lupus over 20 years ago. Tests were positive. The too put me on plaquinil and after learning the side effects, went off it ASAP! I started walking every day and got up to 3-5 miles a day. My daughter was also diagnosed with it as well and I said no thank you to her plaquinil as well. We still have symptoms but No meds. Tests are all negative now but at least we are not on dialysis. Side effects are worse than the disease. I now do ginger every am and pm. Along with other herbs. Good luck. I hope this helps. ..

My ANA test came back 1:640, so it shows auto immune yet I test negative for RA and Lupus, it's crazy

Hi I'm 38 yrs old and I was diagnosed with lupus at age 14 but now years later they are telling me I don't have lupus because my ANA came back negative so they keep telling me that I don't have lupus n the diagnosed was wrong..please help me..

Hello, I understand your confusion. It took me being tested 5 times to get the required test results needed for a Lupus diagnosis. The 1st,2nd,3rd &4th times tested I received false negative test results. Finally, the 5th time tested I received a post ANA, levels needed from results from the other tests used for diagnosis and the 11 criteria ( must have 4/11) complied all are taken in consideration when making a positive Lupus diagnosis. As I'm sure you know there is NO ONE test used to diagnose Lupus. Here is a list of the tests used in diagnosing Lupus:CBC/ COMPLETE BLOOD COUNT, CHEMISTRY PANEL, SERUM PROTEIN ELECTROPHORESIS, C- RESTIVE PROTEINS, ERYTHROCYTE SEDIMENTATION RATE, KIDNEY/ LIVER ASSESSMENT, URINALYSIS, ANTI-NUCLEAR ANTIBODY TEST, ANTIPHOSPHOLIPID ANTIBODIES (APL), ANTI-DS DNA TEST & 4 OF 11 CRITERIA MET.
MY RA DR. TOLD ME ONCE YOU ARE DIAGNOSED WITH LUPUS, AND YOU CAN THEY BE TREATED FOR LUPUS AT THIS TIME. YOU COULD TEST POSITIVE ONE, AND NEGATIVE THE NEXT. I BELIEVE IF I WERE YOU I MIGHT SEEK A NEW DR. ARE YOU SEEING A RHEUMATOLOGIST? I HOPE THIS HELPS YOU. 

 ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

Get tested for LYME
It could be late stage Lyme.
Lyme is misdogonised a lot ( 20 yrs for me)
It can show as symptoms of lupus, fibromyalgia, ext.
ILADS - International lyme and associated disease society
Look into ILADS they wer a great help

Ty so much, I have been reading alot about Lyme Disease actually. Currently I'm bruised all over. Is there a way to send a photo. My Neurosurgeons blew me off about Metal Allergy Testing, said he never heard of it. Ty, Point proven. I did get some great news, though! SC doesn't have a LFA CHAPTER, although we something called Community Partners. The lady in charge called me, read my journey and is contacting some medical universities. She was really interested in my case. So, we shall see. Ty again for the advice. I'm going to call my RA about the extreme bruising, thank God he'll cb right then. I'll ask him in just few when I put in my call.

My little sister is only 12 years old. She is showing signs of lupus, like the butterfly rash on her face. The doctors are testing her for lupus. I was wondering if anyone knew anything about it. Could she have lupus?