Why are my lupus tests negative?

I have now realised that my balance problems (swaying), ear ringing etc are part of a temporo-mandibular joint disorder, which needs further investigation and treatment.  In my view, even medical specialists are an ignorant bunch who have no idea what is wrong with us.  I even told the ENT I had had cracking in my right TMJ for 20 years, and he did nothing to investigate it at all.  Now after 18 months of not being able to go to my dance class, I have to go and TELL the GP what is wrong and how to fix it.  I got the answers I needed from other patients on a TMJ site.

I am a teenage girl. who found out a few years a girl that I had erythromyalgia at first I didn't know what I had it all started with a cold and it mad me really sick finely I told my mom I wanted to go to the doctors they did some blood work because not only was I sick my fingers were red and had spots on them. my joints would always hurt me when they would inflame the doctors thought I might have bone marrow cancer and maybe lupus I was sent to Seattle children's hospital to see a ruematologist. it took awhile to find out what I had and several doctors to find out to figure what I had. after they found out what I had I was put on meds to help with my pain the first medication I was put on was naproxen I didn't like it so then I was put on meloxicam I have been taking that for about a year now I am a very active person I am a dancer and a cheerleader I have been dancing for a long time it's something I love to do it is hard to be active tho because I often flare up more. also when I stress I have a harder time with my feet my hands the blood gets trapped in my hands and feet and the causes it to inflame as time has gone by the older I have gotten it seems to get worse I get a butterfly rash on my face my ears get all hot and red my knees and it is very painful. in December 2012. I had gotten a cold it seemed to be worse then usual I went to the doctors because I was tired of being so sick I had got a shot but I didn't get better then I had got the flue. after getting the flue a few weeks later I was better back to normal then on a normal Thursday night I had started to feel kinda sick I thought maybe I just ate something bad the next day I woke up feeling ok but then started feeling sick. so I went back to bed then threw out the day I didn't want to get out of bed eat or drink so I thought well maybe it's just a bug but as days went by it continued to stay that way I didn't want to get out of bed eat or drink or do anything for that fact. I was 95 pounds and doing good looking healthy looking strong and feeling good I new not eating was a bad thing it is for anyone but as small as I am and active I new it was a bad thing. I dropped down to 80 pounds I felt sad I cried a lot for no resin didn't want to do anything just wanted to sleep and lay in bed I didn't feel good but didn't know how to explain to anyone how I exactly felt. so it was hard for really anyone to help me after awhile I just wasn't getting better so I had my mom take me to a doctor I told them what was going that I didn't feel good and I'm just super tired but I don't know why I told the doctor to just please just help me feel better! well I tested 100% depressed so I was put on Prozac I was happy at first because I thought that maybe that would help me maybe that was just my problem but no I just became worse more miserable then ever after awhile being on the medication & thinking about it I told my mom no I don't think it's just depression I just don't feel good!. so I stopped taking Prozac. I looked up my disease to see if maybe that was my problem well when I looked it up nothing fit but then I so lupus and right then everything fit weight loss rash joint pain chest pain depression fevers. so my mom called my doctor in Seattle and he called the doctor that I had recently had seen to get me tested for lupus. or anything else that could be going on but again in came back negative.. it made me sad because I know something is wrong and it's hard to not feel good everyday and not want to do anything not have the energy to do anything and feel worthless half the time and be in so much pain but not able to explain to anyone how you feel exactly.. If anyone as any ideas on what I should do or to help please help! it's so hard to be so young and not able to feel up to anything god bless everyone.

Maybe you could try seeing a natural therapist instead.  You clearly have some kind of inflammatory disease, of which there are many different types, some not fully understood.  You could also try eating a diet containing only fresh foods and no junk, and also reduce the amount of time spent using technology.  

I have borderline test results as well. If any of you have been put on steroids to control the pain/swelling/inflammation/rashes like I have, the steroids can have an effect on your test results. My doctor specifically told me that if you have taken a regimen of steroids within 6 months of an ANA screening (main test for lupus) then your numbers will come out lower. They are used to lower the immune response to the site, and thus lower the test for the immuno response. I'm switching to a new Primary Care Provider because I've had several symptoms since I was around 12 or 15. I'm now 25 and I can't continue to just keep treating symptoms without a definite underlying cause. Just wanted to give you all a heads up about a potential reason for your borderline or "normal/negative" results!!

had positive ana and double strand,hip,shoulder,finger,wrist,knee,feet and toe pain, redness across the nose and cheeks that i thought was only flushing, but happens more and more often,photosnesitivity,extreme fatigue,toe numbness and tingling. stiffness, depression, protien and micro blood in urine that is not alot and is not always but has been on and off for about 1 year... my rhuem dr was SURE I had lupus... he did some more blood tests that came back negative... now he is not sure if it is or not, he is going to keep a close watch on me and is wanting a kidney biopsy... Don t get me wrong I am thrilled If i do not have lupus, but i also wants to know what is wrong with me.... i also have facial,hand knee, and ankle and foot sweeling from time to time and when i get sick i am so so sick and takes so long to go get better.... I have chest pain from time to time as well. headaches low grade fevers.     all this from one that was a very active person and had alot of troulbe sleeping up until about a year ago...so confused.....

Me too! Suffering for 10 years and every Dr I see has told me that if my ANA test were negative 8 years ago that they are accurate and there is no need to retest.  Ridiculous!  I have been seeing different Rheumatalogist for 10 years and each one said the same thing. Although, I have every symtom possible, they wont retest my ANA.  They will do reg. blood work, Vitamin D and B-12 testing which my Liver/kidney/pancreas function is always abnormal and my Vitamin D and B-12 dangerously low.  I have the rashes, the pain, the headaches, the muscle spasms, exhaustion, brysitis, numbness, tingeling, sometime not just limbs but my face even falls asleep.  Been tested for MS also, and all the docs keep telling me is Fibromyalgia.  Only once was my ANA tested, 8 years ago.  I called Mayo Clinic Today to make an appointment.  I hope they will take me, I have to fill out some paperwork and send back. Once they receive my application and lab work from 8 years ago they will decide if they will accept me as a patient or not.  Fingers crossed!!!  I have heard they are the best for Lupus, which I am certain is what I have been battleing. 

Hi! I understand. I just got my lab tests and the ANA was negative... I have the rash, just the same as the ones on all the pictures in the internet, the fatigue and joint pain sometimes make it very hard for me to do my chores and go to work, and I just feel strange and not myself. I am usually very energetic and a hard worker. Right now I am not understanding my body and feel like a stranger in it.

I wonder how my doctors will take this and if they are going to dismiss this as an allergy or anything. My mom has lupus and my aunt had it too. My aunt is no longer with us, due to kidney disease as a result of her lupus. I guess my next step is to go to the rheumathologist to see what he or she has to say. Good luck finding a new doctor...

I was told during a heart surgeon consult that he felt I had Lupus, I needed open heart surgery due to having a TIA caused by several holes in my heart, presumably from a birth defect however I was under a heart doctors care for the 10 years prior to the surgery having undergone numerous ultrasounds, that never saw the holes, so I figured it was the Lupus that ate through my ASD chamber.

I was then tested for Lupus (along with another blood clotting disorder which was discovered during the open heart surgery) and I was positive for Lupus, so from 2001 through 2007 I tested positive for Lupus. NEVER received ANY treatment for Lupus as it was not nearly as awful as it is now.

Now since 2008 through last month July 2013, I am testing negative for Lupus. Yet, I feel worse than I have ever felt! The doctor just wont listen to me now because the current doctor has never seen a positive result.

I dont know what to do, I am falling apart from this disease and the ignorant doctor/physician assistant wont do anything for me. I am in their office every 2 weeks for either pain to all my muscles and joints, cant take any narcotic for pain as I am allergic, or I have some bacterial or viral infection caused by something. In addition to having nearly every lymphnode on my body inflamed, I even had to have one of the neck ones removed because it was so large it was putting pressure on my ear canal, it was not Lymphoma but Lupus symptoms say inflamed nodes are a side effect.

 

Hi,

Fibromyalgia is the most common mis-diagnosis of Lupus as well as many other autoimmune diseases. If an autoimmune disease it present in your family (especially prominent as in yours) your chances are increased by up to 60% (especially if your mother has an autoimmune disease/s). The craziest thing about autoimmune diseases is that more than likely there is more than one present. If not now, then in the future. I picked up an excellent book from Amazon.com for a couple of bucks that is fantastic at explaining all information of some of the most prominent autoimmune diseases (even Fibromyalgia (FMS) for short), and some of the rarest autoimmune diseases. The book is called "Living Well With Autoimmune Disease" under the title it reads "what your doctor doesn't tell you that you need to know" by Mary J. Shomon. This book is incredible, and descriptive, and VERY helpful even if you don't know all of the medical jargon. Mary J. Shomon also explains what the layman's terms mean in simpler medical jargon for future use. You will need to know as much as possible about both conditions at Least. I had to become familiar with a few because of diagnosis, tests, signs, and symptoms (signs are what you feel and the doctor can't see, and symptoms are the one's visible to others). Good luck hun, I hope you find the proper diagnosis, the doctor and treatment for your ailments!

Wishing you Wellness,

Babs

For over 15 years I had active Systemic Lupus and then it went into remission--with no Lab tests being positive. So now 5 years later I am getting sick alot with extreme intermittent fatigue and muscle aches and many more symptoms but all the tests are negative. I am told by my Rheumatologist that it is not a return of the Lupus, yet it feels like a milder type of it. I am sure my doctor would say this is not possible and all of these symptoms are just Fibromyalgia. So I sit with no answers and still sick...I have even wondered if all this m/b  MS.........

I have had multiple Lupis symptoms for years, nerve pain, migraine headaches, urinary tract issues, butterfly rash, severe dry eye, dry mouth, ets, my labs come up negative. I am diagnosed with Fibromyalgia/depression. Of course I am depressed with all of these symptoms for so many years.

Additional symptoms to previous reply; I have lost about 1/2 of my hair, in the last year, and my skin bruises by merely touching it~

i am going though this'''' now have all these crazy systems but my lupus is neg but i thank god but why am i sick''''sometimes have to stay in bed a whole day cant sleep for hurting ''''''' hurting joint pain heachach hair loss blurry eye skin cant take sun feet turning blue at at times''''''''''''''''''''whats happening to me hand has knots on my fingers hands swell and feet ''back hurting neck hurting shin bruises lord help me ''what going on

I was tested lupus 2004breal ill and had huge butterfly rash my bp was high was weak running fever swollen .tests said yes then 2011 same dr that did testing 2004 tested again when im feeling good lupua dormaint said test neg however when he gave me predisone and methotrexate seem help within few days feel better,so confusing I still get fatigued not as bad winter as summer.

bruising easily is a symptom of cerebral lupus . I was diagnosed with skin lupus Dec. 2013 but also have systemic symptoms . My blood tests for systemic lupus have been neg. Once in a while inside my head feels like it's plugged into an outlet with a terrible dazed feeling. It's very hard to concentrate or carry on a conversation so i looked up brain lupus.