Negative ANA....Can it still be Lupus?

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Minnesota Grandma
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/4/2010 10:50 AM (GMT -6)   
I have multiple lupus symptoms, but my auto immune antibody tests came back negative.
 
I also have Fibromyalgia, Raynauds and have had/have Hashimoto's. From everything I read, Fibromyalgia and Hashimotos are catagorized as auto immune disorders.
 
So, is it possible to have lupus and still have negative antibody tests?  If so, what does one do to narrow it down and get a diagnosis one way or the other?
 
 

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1430
   Posted 3/5/2010 2:38 PM (GMT -6)   
Hey Minnesota Grandma!! Yes, you can have a Negative ANA and still have a lupus diagnosis. There are many members on here who do not have a positive ANA that have lupus.

Have you seen a rhuematologist? They are the people the specialize in rhuematic diseases and the person that will be able to figure out what you do have.

Are you being treated for your symptoms? If you are, I wouldnt push for a lupus diagnosis. It is nice to know what you have but its a real mess if you have a lupus diagnosis when trying to get new medical insurance.

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/5/2010 3:27 PM (GMT -6)   
I am one of those with negative blood tests. Yet here I sit not just diagnosed but with a neurological flare going on and on upteen different meds to boot. Make sure you get a lupus speciailist not just a plain old run of the mill rheumy, believe me there is a difference.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/5/2010 6:51 PM (GMT -6)   
I also have ana negative lupus with multi-organ involvement. Mine was diagnosed by a renal biopsy. I did have postive rheumatoid factor, elevated sed rate and c-reactive protein and the clotting disorder associated with lupus. I would also recommend you see a rheumatologist. Good luck and God Bless, Judy

mariette
New Member


Date Joined Dec 2009
Total Posts : 17
   Posted 3/6/2010 11:59 AM (GMT -6)   
Hi, its really interesting to read your posts. I have been diagnosed with RA since July 2009, then sjogren's and raynaud's since November 2009. I have symptoms of lupus, but my ANA comes back negative. I was on methotrexate, and still am, at 20mg. At my last rheumy visit in February he decided to give me hydroxychloroquine. So even if not diagnosed i am on the meds. Here in UK it makes no difference regarding insurance, as our medical system is different, so dont have to take that into consideration, I think they are reluctant to "label" us. The mtx alone did nothing, it was only going on pred at 30mg from 5th Feb that I suddenly felt normal again, am now down to 15mg, and not too bad. Still workikng full time with 2 babies, so very tiring. Have been told by my gp and the rheumy to at least cut down, preferably to stop working altogether. Will take it as it comes!!! Take care x
 
 
Mariette
 
 
dx- RA Sjogrens, Raynaud's carpal tunnel and overlap syndrome lupus/MCTD
 


Minnesota Grandma
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/9/2010 5:54 PM (GMT -6)   
Thanks for your replies.
 
I have seen a rheumatologist. I had rheumatoid and ANA tests (neg) 11 years ago and again the end of 2009 (neg again). Was even tested for lymes disease.
 
Still, I have flare-ups when all of my joints hurt and swell. I can't hold a cup or open a car door....it hurts to stand up...... I have the butterfly mask, fatigue, Fibromyalgia, Raynauds', hair loss, bruise VERY easily, Hashimotos', some dark skin pigmentation on both wrists, and also suffer from some dry eye syndrome and a little shortness of breath (chest x-rays clear).
 
I just had the ENA profile done, but don't know the results. I believe I also had them done 11 years ago and they were negative.
 
I wrote my rhuematologist and asked him to explain why all my auto immune tests come back negative and yet, I have some diagnosis (Fibromyalgia, Raynauds & Hashimotos) that ARE AUTO IMMUNE DISORDERS !! ??
 
Any thoughts? Appreciate everyone's input.
 
Minnesota Grandma

sharebear37
New Member


Date Joined Mar 2011
Total Posts : 12
   Posted 3/8/2011 1:07 PM (GMT -6)   
I have recently been diagnosed with SLE , I have been sick for over a year with many trips to ER. 14 years ago I believe was my first flare , i had nodules in my lungs for no reason that had to be removed , i had swelling of different parts of body for no reason , aches and pains so bad i couldn't get out of bed. then over the years i would have bouts of illnesses for no reason , lose 60 pounds without trying. Went in for swelling and pain in the summer , couldn't stand any sun I would become very ill in a short amount of time. I have tmj and my jaw would just swell for no reason.
I recently suffered pelvic prolapse , probably due to the connective tissue being weak after a hysterectomy . After that everything was just chalked up to my pelvic issues.

Test after test , bone scans. rheumatologist that said i was fine because i had to wait six months to see him so the symptoms had gone away. This last year i have been so ill with no results. White cell count high for no reason , blood in the urine at every check. Kidney stones , hernia's , it was one thing after another. I had severe chest pain this last trip to ER , have pleurisy and inflammation around my heart sac , the butterfly rash , the blood work said my white cells were attacking not protecting but the ANA test was negative. My doctor seems to be completely convinced that i should have that test positive. My son is a type 1 diabetic with a negative antibody test and his pancreas doesn't work at all. I wonder if it is a family thing of where we test negative for certain anti bodies. I was in the hospital for a couple of days on iv treatment , then sent home with prednisone and plaquenil waiting to see yet another rheumatologist . I have every symptom right now and way more than four of the criteria but my blood tests do not indicate lupus. But to see me he knows i have it.
Frustrating , at the same time I am relieved to know there are others out there with the same issues.. god bless.

Littlesrebel
Regular Member


Date Joined Jul 2009
Total Posts : 163
   Posted 3/11/2011 11:39 PM (GMT -6)   
Your ANA is neg., so that is good. But there is a long Lupus panel of test to pass. Are all the other test positive or negative for Lupus? You need to retest in 3 months as ordered by your specialist I'm sure. Then run the Lupus panel again if it's a false positive or even positive in another three months after that just to make sure. There are over 60 autoimmune disorders, so it could be anything other than Lupus.
Fibromyalgia, SLE Lupus,chronic myofacia pain syndrome, cerivcalgia, malaise, fatigue, migraines, and anxiety.

Littlesrebel
Regular Member


Date Joined Jul 2009
Total Posts : 163
   Posted 3/11/2011 11:45 PM (GMT -6)   
I just read that you were trying to get insurance. If your trying to get insurance right now don't get the Lupus diagnosis. Really if it's neg. ANA then great more power to you for now. I wish mine was. Later when you get the insurance run all the panel's over and over again months apart to find out what you auto immune disorder you have if you have one. If you have one.
Fibromyalgia, SLE Lupus,chronic myofacia pain syndrome, cerivcalgia, malaise, fatigue, migraines, and anxiety.

sharebear37
New Member


Date Joined Mar 2011
Total Posts : 12
   Posted 3/12/2011 9:29 AM (GMT -6)   
I don't think the insurance quote was for me as I am not seeking insurance. As far as the other tests , he did run a panel of tests , he did say that an autoimmune thing was going on as my white cells were not protecting but attacking. To his suspicion my lungs , with the pleurisy and inflammation around the heart sac. And that i had to have nodules removed years ago. I have the lupus rash on my face , butterfly rash or molar rash. And every symptom of SLE with it attacking my lungs. It is very frustrating as I had yet another trip to ER yesterday with chest xrays and it hasn't cleared up that much. A lot of pain in my right side of chest , breast , shoulder , arm. Upped the prednisone which is a horrible drug but needs to be taken. I asked him if there was any other thing it could be with everything that i had and he said no. There are very specific things he said with lupus. Yet because of the negative ana i have to go to the rheumatologist for the diagnoses.

thanks for the reply and information , will be looking into it..

t81155
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/2/2011 10:44 PM (GMT -6)   
I HAVE SEARCHED LONG AND HARD FOR PROFE THAT A PERSON CAN HAVE LUPUS AND STILL TEST NEGATIVE, AND WAS HAPPY TO FIND THIS MESSAGE BOARD. HERE IS MY STORY. I WAS DIAGNOSED WITH LUPUS AT THE AGE OF 12 BASED ON MULTIPLE SYMPTOMS ALONE, BECAUSE MY BLOOD TEST WAS NEGATIVE. MY DOCTOR DIED AND OTHER DOCTORS SHOT DOWN HIS DIAGNOSIS. NOW HERE I AM AT THE AGE OF 56 AND TOTALY DISABLED. MY NEW DOCTOR TESTED ME FOR LUPUS AND I AM STILL TESTING NEGATIVE, THOUGH I AM TESTING POSITIVE FOR RHEUMATOID ARTHRITIS. MY DOC I HAVE NOW SAYS IT IS STILL POSSIBLE THAT I ALSO HAVE LUPUS TOO AND WANTS ME TO SEE A RHEUMATOLOGIST. PROBLEM IS I CAN'T AFFORD ONE. I HAVE TRIED TO GET HELP THROUGH B.V.R. AND SOCIAL SECURITY, BUT THEY ARE NOT WANTING TO HELP, WON'T EVEN PROVIDE ME WITH FUNDS TO SEE A RHEUMATOLOGIST AND ARE POOH POOHING THE DIAGNOSIS OF R.A. THEY ARE ACTING LIKE I'M A CRIMINAL AND CREATING SYMPTOMS TO GET MY GREEDY HANDS ON GOVERNMENT FUNDS. ANYONE ELSE HAVING PROBLEMS LIKE THIS? ANY IDEA WHAT I MIGHT BE ABLE TO DO? I HAVE FOUND AN ATTORNEY WHO IS TRYING TO HELP, BUT NOT REAL HOPEFULL about THE OUTCOME.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 11633
   Posted 5/3/2011 3:30 PM (GMT -6)   
Are you in the USA?
Joy

t81155
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/3/2011 4:40 PM (GMT -6)   
YES I AM

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 11633
   Posted 5/3/2011 5:41 PM (GMT -6)   
I'm surprise you're not getting SSD, medicare, or medicaid.
Why are they refusing you any medical help when you have a positive RA diagnosis?
Joy

t81155
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/3/2011 7:21 PM (GMT -6)   
I HAVEN'T GOTTEN A DECISION YET ON MY S.S.I./S.S.D., THAT'S WHAT THE ATTORNEY IS HELPING WITH.
B.V.R. SAID THEY CAN'T HELP WITH A RHEUMATOLOGIST, BUT DIDN'T SAY WHY. B.V.R. SENT ME FOR EVALUATIONS AND SAID MY R.A. IS MODERATE TO ADVANCED, THEN THEY WANTED TO PUT ME ON THE LESS DISABLED LIST TO WAIT FOR TRAINING AND JOB PLACEMENT. THEY TOLD ME THIS COULD TAKE TWO YEARS OR LONGER, AND THEY SAID THE ONLY REASON I QUALIFIED AS DISABLED WAS BECAUSE I DON'T HAVE WORK SKILLS TO DO SIT DOWN WORK. TROUBLE IS OVER THE PAST 5 OR 6 MONTHS WHILE I WAITED FOR THEM TO MAKE A DETERMINATION ON MY CASE, MANY SYMPTOMS I'VE HAD OFF AND ON SINCE CHILDHOOD HAVE COME BACK TO HAUNT ME AGAIN, AND AT THIS TIME I AM NOT ABLE TO WORK AT ALL. IT'S PRETTY CLEAR THAT B.V.R. DOESN'T THINK THAT R.A. CAN BE VERY DISABLING, AND THEY COMPLETLY IGNORED THE FACT THAT I MAY ALSO HAVE LUPUS.
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