Discussions By Condition: I cannot get a diagnosis.

Can you still have Lupus and not test positive for ANA?

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: c1pearson
  • November 20, 2008
  • 03:21 PM

I have all the signs of Lupus- but my ANA came back neg. My Dr. gave me a refferal to a Rheumatologist but they can't get me in until Dec. 19th and I am frustrated-

I have severe night sweats, continual low grade fever, extreme fatigue, joint pain in my wrists and fingers- which seems to be worse with cold- flu like symptoms for over a year- trouble thinking, muscle aches, can't gain weight - sores in nose

neg- ana test
ASO- came back high yet I don't have strep
Low Vitiman D- put me on 50,000 units once a day for 8 weeks
RBC is normal now but goes low then normal on and off

I don't know what to do- but having to wait a month is just frustrating and was told seeing the RA is a waste because of the neg. ANA test

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19 Replies:

  • No medical test is 100% sensitive & 100% specific.The ANA test for lupus is pretty good at 93% sensitive (For every 100 people that have lupus, this test will 'catch' 93 of them) although a positive ANA does not mean you HAVE lupus. (Confusing, isn't it? :) )Good luck -B
    Anonymous 42789 Replies
    • November 21, 2008
    • 02:22 AM
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  • so if I tested neg. for the ANA but have all these other symptoms there could still be a chance that I do have Lupus- right
    c1pearson 2 Replies
    • November 21, 2008
    • 10:22 PM
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  • Hi,I'm going through the exact same thing all blood work was normal except VIT-D all the same symptoms for lupus already had my rheumy appointment and did a repeat in blood work...and I'm left with no definite answers as in does this rule out lupus???? I've been to many doctors and have been told possible fibromyalgia,CFS and plain they don't know .I guess if you don't fit the criteria for a DX of lupus then they CAN'T say those words. By the way how low was your Vit-D? Hope you have better luck MAE
    mae3057 50 Replies
    • November 21, 2008
    • 10:50 PM
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  • I am so sorry to hear you have been going through the same thing as it is so frustrating- although somewhat comforting to know I'm not alone. I don't know exactly how low my vit-d was except it was low enough for them to put me on this 50,000 units once a week for 8 weeks and told me to try and sit in the sun each day for at least 10-20 minutes. It is just crazy- The Rhem Dr can't get me in until Dec. 19th and my joints in my fingers and wrists are killing me especially now that it is getting colder. The huge thing that really bothers me is the fatigue and the night sweats and just feeling foggy- I am in sales and I'm on the phone all day and I keep switching my words around- entire sentances but apparently the Dr.s aren't concerned with that. What I don't understand is how you can have all the symptoms of Lupus and have a neg. ANA and your right they won't DX it. Ahhhh I have been like this for over a year now and it just is not getting any better. I don't know what to do or who to see, but I know it is not in my head.
    c1pearson 2 Replies
    • November 21, 2008
    • 11:33 PM
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  • There are other things not just lupus which could cause symptoms like that.. eg chronic fatigue immunity dysfunction syndrome (CFIDS). flu like symptoms are quite classical in CFIDS. CFIDS is often a missed diagnoses. The CDC say that 80% of patients with this remain undiagnosed as most doctors dont know enough about this illness to feel comfortable diagnosing it and there are many misconceptions about it about the place. I suggest to read the good symptom list at http://wwcoco.com/cfids/bernesx.html based on studies on this. A rhemologist may end up trying to diagnose you with Fibromyalgia..but be aware that Fibromyalgia often is present is CFIDS (just a symptom of it) and Fibromyalia dont cause the other things you have eg the night sweats but CFIDS does. In CFIDS problems with D are common (thou they are also common in the normal population too). I have CFIDS and are extremely deficient in D.. i have lots of sun but my body cant convert the D to it's active form so i have to take 100 000 International units of D (a mega dose) monthy.
    taniaaust1 2267 Replies
    • November 22, 2008
    • 04:39 AM
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  • I'd like to add that most doctors .. 95%+ of them.. are not up with the latest research on D deficiency. D deficiency can cause all causes of symptoms eg body pain, tiredness etc and D is important for immune functions too. Some of your symptoms may go away once the D issue is fixed and your normals are good. Make sure your doctor retests your D. ............ I'd like to add that CFIDS isnt a wastebasket diagnoses either (for anyone who is currently thinking that). One of the world top CFIDS researchers says he thinks he have a diagnostic test (blood test) out for it within a year. (guess we will have to wait and see.. but there are things which do show on tests with CFIDS but they are currently nonspecific things and not so in everyone with it).
    taniaaust1 2267 Replies
    • November 23, 2008
    • 00:20 AM
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  • hey,taniaaust1 what type of treated for that condition? and is there any difference between cfis and cfs? I've been reading that VIT-D has an underlying cause your just not deficient in it any more info on that??? And To: cpearson if you don't get any resolvement with rheumy I'm thinking maybe a Endocrine doc thats where I'm headed next....one way or another I'm going to get some type of answer besides I don't know. My illness happens to be every single day and hasn't gotten better in 8 months this is ridiculous! And I really feel for everyone that has to come to this Website:( stay it touchMAE
    mae3057 50 Replies
    • November 23, 2008
    • 00:42 AM
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  • Hi, I am going through some similar testing but thankfully do not have the pain, fever or night sweats. My ANA came back fine as well. Just a question, have you had your parathyroid and blood calcium checked? If you have phyperparathyroidism, it can do all kinds of things to your body. If there is a adenoma (benign tumor) on one of the parathyroid glands, remove it and most problems go away. Just something to look into. Parathyroid.com has a lot of educational information. I am undergoing some tests to rule out hyperparathyroidism as well as autoimmune disorders, etc. - have microscopic colitis, Raynauds, frequent head aches or migraines with aura, high PTH, high-normal calcium - just not sure which specialists to see. Good luck!
    vkm416 3 Replies
    • November 23, 2008
    • 04:51 PM
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  • I think an endocrine doctor is the best choice. MAE
    mae3057 50 Replies
    • November 27, 2008
    • 00:03 AM
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  • I disagreeNo medical test is 100% sensitive & 100% specific.The ANA test for lupus is pretty good at 93% sensitive (For every 100 people that have lupus, this test will 'catch' 93 of them) although a positive ANA does not mean you HAVE lupus. (Confusing, isn't it? :) )Good luck -B
    Anonymous 42789 Replies
    • December 27, 2009
    • 09:04 PM
    • 0
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  • I have been having the very same problem for years. Same symptoms except for the fact that I suddenly gained a huge amount of weight and have had no luck in losing any of it. I had the negative ANA, Low Vit D, and have been to many doctors and specialist that have told me I have chonic pain syndrome. I am at my wits end. I am in pain and frustrated that no answer can be found. I did not even think it could be Lupus until a week ago when I saw a TV ad that mentioned my symptoms and no diagnosis could be linked to Lupus. Except now that I know I have tested negative for ANA and that is the door that closes doctors consideration of the posibility of Lupus, I must just come to accept that I am going to be in pain and misserable for life................
    Anonymous 42789 Replies
    • January 27, 2010
    • 04:06 AM
    • 0
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  • Don't give up yet till you read this.... I was dx with Lupus in May 2008 with positive ANA and several other typical blood test for Lupus confirmed it. However, I just moved and my new rheum has taken two blood tests and my ANA's are negative. I was happy at first because I was experiencing a time of peace in comparison to my past health history. The doctor even seemed to question the dx. And, so did I. Then I had one of my many and typical hospital visits now he's perplexed. I'm not sure where you are living, but if you can get to UCLA known as one of the best medical facilities for ground breaking treatment on Lupus, get there.
    Anonymous 42789 Replies
    • February 3, 2010
    • 02:06 AM
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  • I have all the signs of Lupus- but my ANA came back neg. My Dr. gave me a refferal to a Rheumatologist but they can't get me in until Dec. 19th and I am frustrated- I have severe night sweats, continual low grade fever, extreme fatigue, joint pain in my wrists and fingers- which seems to be worse with cold- flu like symptoms for over a year- trouble thinking, muscle aches, can't gain weight - sores in nose neg- ana testASO- came back high yet I don't have strepLow Vitiman D- put me on 50,000 units once a day for 8 weeksRBC is normal now but goes low then normal on and off I don't know what to do- but having to wait a month is just frustrating and was told seeing the RA is a waste because of the neg. ANA testI have the same symptoms even the low vitamin d level and have been in er several times for problems which i have been sure are all related several of my fingers are even going crooked i am only 42 and a nurse i have night sweats severe fatigue, pain and it takes all i can do to make it through each day that i have to work i was diagnosed with fibromyalgia 13 years ago but in the past 2 years i have suffered deabilitating symptoms. In june i had surgery for an abdominal abcess and i was hoping that would be the cause but to no avail i still have the pain, fatigue,weakness, night sweats and out of the blue my bp will bottom out and i will almost pass out this happens about every 2 or 3 months I was also diagnosed with cysts in various places, ovaries, liver and spleen.
    Anonymous 42789 Replies Flag this Response
  • Hi,I'm 20 years old and have been having the same issues. I've been dealing with persistent worsening pain in my joints and muscles for going on 4 years now. I've been from doc to doc in multiple fields and no one can seem to figure me out. All of my blood work comes up negative (including ANA) except for vitamin D which was exceptionally low (which shocked everyone who knows me. I'm a very active outside person and was in drumline for 4 years....makes no sense). Started taking vitamin D and it seemed to fix the levels but nothing else. Every doctor I see seems to think I may have Lupus (which would actually make sense. it's the sister disease to MS, which my mother has), but with a negative ANA and everything else being negative, my doctors are all getting stumped and passing me off. I've tried getting into the Med Schools but no one will take me with negative results. I do have definite joint degeneration in my spine. I have 2 herniated discs, in which the tissue is deteriorating. I have a 1 cm large synovial cyst in my lumbar spine, and I have facet joint degeneration. I have had random bouts of pleurisy in my lungs which seemed to kind of fix itself. I also have fluid in my hip joints. Some docs say it looks normal, some say it doesn't. So between all the evidence and the lack of, no one can seem to figure me out. Could this be lupus??? Or any other ideas???From one frustrated and in pain college student....
    drumlinegirl247 1 Replies
    • January 8, 2013
    • 07:33 AM
    • 0
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  • I have all the signs of Lupus- but my ANA came back neg. My Dr. gave me a refferal to a Rheumatologist but they can't get me in until Dec. 19th and I am frustrated- I have severe night sweats, continual low grade fever, extreme fatigue, joint pain in my wrists and fingers- which seems to be worse with cold- flu like symptoms for over a year- trouble thinking, muscle aches, can't gain weight - sores in nose neg- ana testASO- came back high yet I don't have strepLow Vitiman D- put me on 50,000 units once a day for 8 weeksRBC is normal now but goes low then normal on and off I don't know what to do- but having to wait a month is just frustrating and was told seeing the RA is a waste because of the neg. ANA testJust because you tested negative to ANA does not mean you do not have an autoimmune disease. Only an RA can give you a diagnosis. There are over 200 different Autoimmune diseases other than Lupus. I know because I have one. I was also misdiagnosed with Fibromyalgia. I do not have it. I too was discouraged from seeing an RA but, took matters into my own hand. Now I am in remission. I am go glad I was proactive in my treatment. Doing that saved my life.
    Grandmom 25 Replies
    • January 18, 2013
    • 00:28 PM
    • 0
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  • Absolutely, don't give up! You can have a neg ANA and have other types of autoimmune disorders, also. What is helpful is to have your family history, along with pain or other symptoms. Told Dr. had family hx of RA, check my ANA, RA factor back in 2008, neg. I asked for a referral to Rhem anyway...NO. So, I've lived with the pain since then. That is until 2012 I noticed that I could not breath laying down. So, family took me to DOC in Box on a Sunday, sent straight to Heart Hospital. First, dx was pericardial effusion, then with a cardiac tamponade, also had pleural effusion, bilateral, with infiltrates to lower lungs, fever, night sweats, etc. Drs told me Viral. Checked all normally checked Rhem panels, still ANA neg. Heart would race and jump out of my chest. Third adm to first hospital, Predinose 120mg and Aspirin 2600mg, 2 very strong antib, still Viral or Unknown, Drs told me they were experimenting on me apparently they no longer practice medicine, loved that one. Finally, decided that the Hospitalists at first hospital could not diagnosis me nor call for specialist to consult, since they had refused that, also. I decided to go across town to the other hospital, had some records from previous adms. This time, I had pneu, pleural effusions, pericardial effusion, asked for consults if needed. After seeing young Res Hospitalist, I thought no way am I going back down that path I had just been, asked to see his Attending Phy. The Attending immediately jumped on my case called all the specialities in. After being released from hosp, managed to get in with another Rhem, gave him all labs so far. Rhem ordered different panels of blood work, my ds-DNA showed positive, twice. It's sad that some Drs don't believe in patients, I do understand, why. But, I don't think anyone can make their pericardical sac hold 1100 ml of fluid and have it close off the left vent on purpose and almost die from it. 50% of cardiac tamponades are found post-mort, so I really do count my self lucky, even if the first hosp thought it was viral or not. So, on 5th hosp adm within 4 months, dx with Lupus. I'm young, white, and male, ANA still neg, with no rash. Second hospital was totally different than first, very supportive on both admissions. So, don't believe every doctor or everything you read. I'm proof of the odds, the less than 3%. Luckily, I had someone who was willing to fight for me, while I was too ill to do so, otherwise, I would have not been dx or poss even be dead at this point. Just figured out, that I am also sensitive to light UV, not talking about skin, I'm talking about internal organs being affected, the pleural effusions. Lupus is truely the illness of 1000 faces. Symptoms that change, also. There were two other individuals that had cardiac tamponades at first hospital while I was there on third admission, one was young, white male...I hope, he will find his answer, it was unknown cause, also. I will never know if Rhem panel would have showed anything back in 2008 but to be in ICU for a wk and a total of 25 days in hospital in 2012, I'd preferred finding out a easier way than to have all this happen to my body. Fighting our illnesses, trying to stay educated about illnesses and how it affects us is enough to deal with. We should not have to fight the Doctors and Nurses, who are suppose to be there to help us in our time of need. Do they not remember their Oaths??? If one doctor, can't figure out what's wrong with you, get a second or even third op. Make sure you have copies of records, esp labs, so you don't have to repeat everything.Good Luck to Everyone...we all need it from where I am, Anyway!
    as3692 2 Replies
    • January 27, 2013
    • 02:50 AM
    • 0
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  • Yes u can I was told I have lupus the Ana was positive then was negative and they said even if its negative it can still be seen with a biopsy don't give up hope
    RebeccaRose 3 Replies Flag this Response
  • I feel your frustration and sorry to hear this. I am going through the same. ANA ok but C3 and C4 complimentary low. My whole body is in agony. Nobody seems to believe me. I'm really distressed. I wish I could help you better. I put up a post - mybe you might have some silimar symptoms / maybe something I say there might shed some light if but small.
    Anonymous 42789 Replies Flag this Response
  • I know this is an old thread, but I wanted to put in my 2 cents worth on the topic. I've been going through the same, being unable to get a diagnosis >10yrs. The closest I came was a neurologist in 2010 saying I'm a textbook case of Multiple Sclerosis, except he can't diagnose me with MS, because my MRI's didn't show MS lesions. Have you gone to a Neurologist yet? Might want to try that & check on a disease called Sarcoidosis, as your symptoms fit. G'Luck to you and all others going through this
    Anonymous 1 Replies Flag this Response
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