Why are my lupus tests negative?

Hi everyone,

I have the butterfly rash as well. Negative ANA. I had joint pain, bone pain, fatigue, hip pain, & restless leg syndrome. I went to several doctors all of which couldn't find anything wrong with me. Then I went to a chiropractor who said get off of gluten. I felt better in 10 day. I love the way I feel now!!!!

Well, I'm in the same situation.  I'm a 27 year old mother of 2.  My blood work all came back inconclusive today.  The only thing was that I had a low WBC.  I have severe butterfly rashes and hair loss.  I've been struggling with crippling chest pain since I was 17.  I have had multiple surgeries to remove scar tissue from my knees because of the constant swelling.  I have been experiencing pretty extreme weight loss as well. I'm exhausted all the time and my joint pain is so severe.  I get rashes on my arms and legs that are circular, patch like and last for months.  I've had multiple miscarriages and had to have a hysterectomy.  I have severe allergic like reactions to absolutely nothing.  If I itch my lip, it swells up.  I seem to just get hives all the time.  I've been on everything medication and nothing seems to be helping anymore and I'm really starting to get worried.  I'm severely ill and no one knows why.  I've been told I have lupus, and then that I don't over and over.  I just want to go on with my life and enjoy it with my husband and kids.

Try giving up the gluten. So worth it!! There is a good gluten free bread- Udi's with the green strip-whole grain. You can find it at jewel or whole foods. Do you have cat's? Circular rash could be ring worm? My friend had a rash from gluten on her leg- it took a year to get ride of it. Gluten causes inflammation. Best of luck to you. Don't give up.

I understand the problem all of you are having cause I am dealing with the same. Very healthy till 2006 when i fell with a Traumatic Brain Injury and my health has been downhill since with worsening symptoms and several diagnosis. In 2008 the first diagnosis was memory loss,processing and recall problems with post concussion syndrome. Then it was dementia. I began having seizures,migraines,neuropathy,severe fatigue and hair loss. Stomach issues,spondolytis,Reynauds syndrome,cystic kidney disease,somataform,bi-polar. The list goes on and on.  Finally last May when I had a seizure that lasted over 2 hours my neurologist treated me with intravenous antibiotics then with orals for 9 months for lyme disease. I still had the fatigue and neuropathy but felt much better. After seeing 2 rheumatologists and an infectious disease doc who all said autoimmune. I finally got a lupus diagnosis 2 weeks ago but my bloodwork looks good. He wanted to put me on steroids and I refused because the last 2 times I went on steroids I was bedridden for 3 months and had severe eye and balance issues (double vision,my eyes due not track correctly and my peripheral vision does not work on the right.) Steroids tear the immune system down and so does lyme disease that is why I refused the steroids.  So I don't drive anymore due to seizures and vision. ugh  At this point I am so frustrated and not sure who to believe or which doc is really listening.  However, Friday my neurologist gave me Neurontin for the awful nerve pain I have and it has begun to curb the pain but the neuropathy is worsening.  The first 3 days the pain got worse and I was very tired and had a headache. Now I will begin a double dose so who knows what the weekend holds. With less pain I feel like I can at least get out of bed and try to do a couple things around the house. So.... that's better than things have been for 6 years.

Some labs have ther criteria for some blood tests set too high and that could be why some of us test negative. Any other ideas?

Yes I have been through all of this since 2006. Finally after a seizure that lasted over 2 hours I was treated for lyme disease for 9 months. Last week i was diagnosed with lupus with no positive bloodwork either. I have learned some people can have negative bloodwork due to the labs having their criteria set too high so we don't fall within the numbers they say we should. My rheumatologist diagnosed me with lupus strictly based on my health history and the lupus criteria. I have all the symptoms except one. I could suggest finding another doctor who will use your history and symptoms. Also, do some research about lupus testing and criterea at the Lupus Foundation.

I had been gluten free when I was being treated for lyme disease. I think I will try it now that I have been diagnosed with lupus. Thank You for the reminder.

A circular rash could be lyme disease! Find a lyme literate doctor and be tested as quick as possible, Just remember the tests are highly unreliable so be sure the doc is sending them to the correct labs.

Hello. Sigh. Same for me. All my life I've had many of these issues with no serious investigation. It angers me, scares me, and confuses me. I have had several "blackouts". First one in kndergarden when I completed when unconcious and had the principle and nurse finally bring me back awake. I quit playing sports after collapsing from running the mile. Only when I blckout, my vision turns white, I lose hearing, but can briefly walk before I collapse. At least one time I also had a seizure waiting in line for snacks at a very busy movie theater. My symptoms are: blackouts, hair loss, dizzy/lightheaded, nausea, disorientation, confusion, shakyness, quarter sized puss and blood free lumps, weight gain and loss, insomnia, mood swings, dialated pupils, sore throbbing dry eyes, sore temples, reapeated strep throat and sinus infections, constant swollen tonsils, hard sore salvitory glands where jaw meets earlobes, ear popping/clicking/pressure changes for no reason, ruputred eardrum, light sensitive, food intolerances, stomach ulcers, bruise easy, swollen ankles, swollen lymphs in armpits and breasts, high ca_125 levels, abnormal paps, sound sensitive, horrible pms and irregular periods, kidney stones, frequent utis, pnuemonia that needed hospital 5 days, pluerisy, low white bloods cells, palpitations, low blood pressure, severe flushing and hot flashes, migrains lasting weeks, colds lasting up to 4 months, recurrent tiny red bumps on scalp and chest, leg pains in same spots but don't seem to be joints, anxiety/depresion, high urine protein, wrist get sore and its not carple tunnel, moles have changed, rosecia, dry mouth, itchy face/eyes/ears/legs, cold hands and feet, body throbs and pulsates, sore body, very very tired some days, change of eyes color, hair went from straight to wavy, the sore wrist/knee/elbow mostly on the right side.I also have a dna mutation where it affcts my homeosystein levels and I have to take a high dose of methylfolate.lastly, eye single light I see has huge amount of glare, even during the daytime. I'm aware these might be several small issues, or not lupus. But, its been 5 years since these symptoms have gotten very noticable at one time, and they have not let up. Instead, they cycle. One set of issues, then move on down that list. I'm not crazy but the longer it takes for the to figure itout, the more Angry and worries, and scared I get. Its making me crazy. } : and as of yet, no real answers. I've now got 9 specialists and 3 more to come. It feels like a huge waste of time. I just want to either a)prevent something bad from happening, or b)know what's going on to get treatment. Sigh. I feel your pain, litterally. Altho, not as severe as many of you. Oh, I've had a mouth sore that hasn't healed in 2 months and they did a biopsy and said it "might" be mouth Cancer. They are removing it next week for a more thorough look. I'm so sick of being sick. I hope its not lupus. Never had the face rash but many above symptoms fit with lupus. I don't want it, but part of me wants to be diagnosed so I can end the cycle with appropriate treatment. It just never ends. Thanks for sharing your stories and reading mine. I hope we all get the answers we deserve

Its me again. Very sorry for the poor grammar and spelling. I'm using my smartphone and the keys stick.

I guess I'm in the opposite position. I'm 32 and recently delivered my daughter stillborn at 20 weeks after trying for over seven years to get pregnant. (I do have a ten year old son that I got pregnant with without even trying. LOL) The doctor immediately wanted to test me for Lupus because she said it was known to possibly cause stillbirth. However, when I delivered her we discovered it was a cord accident. The baby's autopsy came back clean which solidified the cause of death as a cord. The doctor still wanted to run the tests on me, so we did. The ANA came back positive, so she sent me to a Rheumatologist. A week ago I met with the Rheumatologist and she told my husband and me that she did not believe that I had Lupus because I didn't display any signs of it. We assumed that my positive ANA was due to my Crohn's (diagnosed in 2009). Well, this week I got my results back and I was positive for an antibody associated with Lupus and the Ro antibody associated with Sjogren's. I got these over the phone while driving, so I didn't really ask questions. She didn't flat out say that I have Lupus or Sjogren's, but I wasn't fully coherent enough to ask if those positive results were enough for a diagnosis. Either way, the Rheumatologist was floored because she said I displayed no signs for either of them. She even mentioned that she was going to go back and look at all of the questions they ask to see if she had missed something. No one can figure out how I have these things and not be displaying symptoms. I'm just focusing on the positive and thanking God that I'm not experiencing the symptoms! I would definitely recommend getting into a Rheumatologist though for any of you who have not seen one yet. 

I am having the same issue with testing.  I became ill last summer and it lasted into the early part of winter.  My symptoms started with migraine headaches daily, hip pain, knee pain, numb purple toes, pain in my shoulders, elbows.  The pain eased and then I began to get fevers daily, chest pain, FATIGUE, mouth and nose sores, hair loss and skin lesions around my hairline and on my legs and knees, and felt like I was going crazy in my head. My ears were and still are ringing like mad, vision problems and it went on and on.  I went to the emergency room 2x because my right foot went dead and had no feeling. Unfortunately, I don't have insurance...I did finally see a physician outside of the ER.  She ran the tests for lupus and the only thing to come back was a slight supression of a thyroid hormone; it made my heart race and could contribute to some of the symptoms...so I was put on a beta blocker. Eventually, the symptoms subsided some.. but I never got all of my energy back.

Fast forward a few months.  I had some vacation time and I spent it at the beach.  It's still relatively cool so I didn't even think about having an issue with the sun. I spent some time outside but not alot. Within two weeks I began having symptoms..primarily, pain in all my joints, headaches, insomnia.  After a few days of the discomfort, the pain seemed to go away, except my knees.  Yesterday I was outside for only 10 mins. I was covered, wearing pants and a long sleeved shirt...but my skin hurt so damn bad it felt like a blow torch was burning me. It was absolutely unbearable. I went into the house immediataly.  Last night my knees, hips and thighs started to hurt very bad and the horrible fatigue kicked in...its an unnatural fatigue...my whole body feels drained...and today is bad..I feel feverish, tired, apathetic. I'm scared to get sick again like I was for months last year. I was absolutely miserable and there were times I thought I was losing my mind.  I could hardly operate the stereo in my car let alone the car. My period stopped during this time too and as soon as I returned to "normal" Ha... it came back.

I don't know what to do? Do I go back to the same doc?  Do I take it upon myself to go see a Rheumatologist...it's private pay...what should I do at this point?

You can have a false neg. and this is very common. I had several done over a 6-7 year time span all neg. I ended up asking my GYNOB to do BW. My ANA came back pos. I also have been tested for other illnesses and BW came back fine. Have you been to R.A.? There are 11 criteria you have to so many of the symptoms to classify with having Lupus.

Hello all, I am currently undergoing tests for most of the symptoms relating to Lupus, my GP, seems to think it is. However I have been to see a specialist, as soon as he knew I was on medication for Depression, he said basicly it was in my head. I found this so unfair as he made his mind up on my Depresion not on my symtoms. I hope and pray it`s not Lupus, but am suffering with so many ailments I honestly think it must be. My daughter has ADDISONS, and my late mother had MS. Any advice please so frustrated.

I am a 31 year old female who has been told for sixteen years and by six different Rheumatologists that I have Lupus. I have had several positive ANA results. I saw a new Rheumatologist today to get results again and she told me that I never have and do not currently have Lupus and that all my results are negative for anything. For sixteen years, I've had debilitating joint pain, terrible fatigue, bouts of pancreatitis, hair loss, skin rashes, multiple hospital visits, vision loss, migraines, Heart Surgery, Pleurisy, issues with concentration, mood swings, depression, mouth sores, ulcers, constant chest pain and hypertension. I've lost one job and because my PCP had me out of work for Lupus complications, am looking at losing another job because this new Rheumy sent the labs she ran to my employer's short term disability department. I haven't received a paycheck in almost a month and now they've made it seem as though I've been lying all this time. I'm hurt, angry, sad, confused, depressed, and am now being told, oh...it's just fibromyalgia. How could six other doctors have been wrong???? Thanks to everyone for sharing their stories. I've requested my pcp have these tests run again by a new lab. I've got to get to the bottom of this before I lose everything including my car, house, and mind!!!!!

So sorry to hear off all the problems. God will take care of you.  I would go to another doc.