Is this possible? My rheumatologist looked at me and said he doesn't think I have lupus even with a positive ANA. Has anyone heard of this? I would love to not have lupus, but seem to have a lot of the symptoms and have to wait 6 weeks for results...ugh!
Positive ANA doesn't necessarily mean I have lupus? - LUPUS UK
Positive ANA doesn't necessarily mean I have lupus?
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Natura
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LupusAdmin3LUPUS UK
Hi Natura,
The test is used as a way of screening for auto-antibodies which may then be used to identify individually by other tests. Around 95% of lupus patients will show a positive result and 5% in healthy people, therefore it is not necessarily a conclusive diagnostic but more of a supporting evidence when symptoms suggest lupus.
I have attached our factsheet 'Lupus The Symptoms and Diagnosis' for you as it features a section explaining about the ANA test in more detail.
Hope this helps and if you need anything else please do let me know.
lupusuk.org.uk/images/pdf/3...
Best wishes,
Hayley
LUPUS UK
Thank you Hayley...so, I could be that 5% that shows positive but doesn't have lupus? I will look at link...thank u
Hi Natura,
I couldn't possible comment on that i'm afraid. You mentioned that you are awaiting results in your previous post, have you had any other tests specifically for lupus?
Best wishes,
Hayley
LUPUS UK
I’m very worried because I have tested positive for lupus with the ANA tests, and I have more symptoms, they are telling me it could be a false positive but I won’t have more blood work and test done for about six weeks. Why would they wait so long for more testing and I’m a worrier too, so I’m kinda freaking out!!!
I had a general lupus test done by kidney dr. Because I have scarred kidneys. He read the report and told me I had low end lupus. But, the rheumatologist I just saw did further blood testing on me and I won't see him again for 6 weeks. He said he didn't think I had lupus because I was healthy looking. Isn't that interesting. I hope he is right.
My daughter has lupus but you can't tell by looking at her people are always saying to her " you look so well" what a stupid thing for a consultant to say, hope you get some answers soon!!
Larry... I do get annoyed when people keep saying you look healthy...the pain is inside.. Thanks for your support.
The pain is inside yr correct why aren't doctors more informed?
My daughter has had inflamed lung tissue chest pain, stomach pains, indigestion so bad she can't eat, travel sickness. joint pain and fatigue so bad at times she can't get out of bed, she has to have an echo cardiogram because it may have affected her heart! Why aren't doctors listening to patients who know their own bodies!!!!
Boy u said it! I know my body well too, and know when things are not right. Doctors seem to take offense that we know when something is off. I do also have trouble breathing sometimes, but dr kept cutting me off when I told him some of the things that were bothering me. I may have to go somewhere else. Will wait for results and see.
I can get short of breathe pretty easily
misery...it makes you a little cranky when you have trouble breathing, doesn't it? It does for me. Terrible to have to work hard to breath and catch your breath and not be scared. I don't think people have any idea what we go through.
I saw my Dad have trouble breathing ,and it was pretty scary! He had asbestos lung-work related.
So sorry Dgleds...that is very upsetting...I hope he is getting help....
so much probs posting tonite...
anyways I only had positive ANA and inflammation..thats all!! and I think 4/11 things when asked a few questions by Rhumey... One minute he is all serious about my condition, next time he makes lite of it...Last time he was worried cause I have my meds down pretty low (he forgot he said that ok), and said if I went off them, he's pretty sure I would have full blown Lupus...Meanwhile I go to the lab for my 6 month blood tests, and lab tech says "why don't you have a standing order"? &...most others have that.... He says that must mean the Rhumey is still trying to figure it out...Hmmm an eye opener to me...
I am pretty low on vit D...I found out...
Its not sun makes me feel crappy or weird...its the heat...and the other day I think it was so hot out (I got the runs and gut probs/nothing else could of done it)...who knows...
Dgleds....hard to understand these doctors...when we need them to be sure, they can't be. Sorry for your pain. I take 5000 iu of vit d a day with vit a (I was told my a nutritionist to take both together as vit d alone could be unwell)...there seems to be a link with low vit d. I have read this in many places. Hope you feel better...
I wonder if its the using sunscreen makes the low vit D count...or using plaquinil, or just the lupus its self....When I get my D count back up, I want to get back to the combination of calcium with magnesium and vit D.,.but you cant buy that combo very high dosed. I do take A , but only 5 days a week...(not the betacarotene (sp)...the other A I take, and it can build up in your system. Of course they use to say bad things about too much D, so who knows now...
Dgleds...I take the veggie vit a so it doesn't build up in my system. Nutrtitionist said to check with doctor first if I take other vit a. Does it work better than the vegetable a, I wonder. It isn't easy...
i too agree what a dreadful thing to say, i saw a rheumatologist on thursday after 2 abnormal bloods, he had me in tears never met such a rude man, he said the gp had sent me as she was sick of seeing me was this meant to be funny??, after 10 mins of him Not listening to a word i was trying to say i left feeling worse and let down im still no wiser as what i have, good luck xxx
Jayne...i am sorry. I think doctors get frustrated when they don't know something about a disease. It reflects badly upon them and they feel inadequate. That is my theory. We have to learn to not listen when we know in our hearts something is not right , and we aren't making up symptoms. Why would we? No one wants lupus! I hope you find comfort from this site. I know I do. Try to find another doctor. I left the doctor that made me cry and found another. Good luck!
in reply to Natura
Sorry to blow up your message board here but im finally getting the chance to ready through all the posts. Im very passionate about this topic, hits close to home. Natura I 100 million % agree with your theory!!
You can be 'healthy looking' and still have SLE so that's rather a strange thing for a doctor to say. As Hayley has already mentioned, the ANA test is not specific to lupus as a positive result can occur in other conditions as well (such as Sjogrens Syndrome for example) and other tests are then run which are more specific to determine which condition it could be. You might find this link useful as well as the link Hayley has given you: arthritisresearchuk.org/art...
Yeah you can, she might just not have skin symptoms. I have SLE but no one would be able to tell just by looking at me most days. I have no skin symptoms except slight erythema on my hands, everything is joints and muscles so non visible.
Irish...I have very few skin problems other than a very itchy scalp, the skin falls off my right forefinger on and off and my heels crack terribly. I don't really exhibit the butterfly rash.
Yeah, sounds like you're in a similar boat to me.
and apparently lupus arthritis doesn't deform joints either.,.or not much.
Really? Well that's nice to know 
That's what I read anyways...
Hi Natura, I think it is only an indicator. My ANA was 1:80/speckled and was only taken into account because of my symptoms and because I am also positive to anti Ro and anti La, and I have neutropenia.
Natura in reply to
Madlottie....I was also 1:80...if u dont mind me asking , do u have lupus?
in reply to Natura
Hi Natura, yes I have been given a diagnosis of Lupus/sjorgens overlap
Natura in reply to
I am sorry madlotttie...I hope u r not suffering. It seems the ANA is not a definite indicator of lupus. Very interesting...will have to wait and see.
in reply to Natura
Keep us posted. Look after yourself x
Natura in reply to
Thank u! U Too!
yupperz I wanna know too..
My ANA was 1:320 homogenous and finely speckled, but you know my thyroid is hypo and has been a while..it was going crazy at the time..up and down, but so was menopause...and no one seems to consider that...
Dgleds....I am just about done with menopause, and slightly hypothryoid too. I noticed my hot flashes at night and day have finally subsided. I thought it was do to hypothyroidism. I am taking digestive enzymes for 4 months now and still think there is a connection with intestines and lupus as a preventive doctor student believes. So difficult to get help and assess when doctors don't really know how to treat except the symptoms we get. It would be nice to see preventive medicine going on. This is something new going on in New York. Not sure if the rest of the world has degrees in this field, but this could be our future- preventative medicine. I love the idea.
My rheumatologist said the same to me while waiting for the results, I think they like to stay optimistic. Fingers crossed for you that you're in the 5%!
Hi, results of what, I've just been watching a video from lupus alliance America where a consultant rheumatologist who specialises in Lupus is talking about the up to date information on lupus and he said he would diagnose lupus on symptoms alone, without positive blood tests and a positive ANA is one of the blood test for Lupus or other autoimmune diseases what would the be the point of doing the test if they ignore the result, keep going or change your consultant if you don't get an answer from him.
Larry....I was telling him about my symptoms and he really wasn't listening. He sort of dismissed a lot of them. I told him my brother has intrinsic circulation anticoag lupus, my sister has hashimotos. He put in his notes that is what he thinks I have hashimotos. He totally ignored my brothers illness. Plus I have a second brother with a genetic clotting factor. I know he was trying to be very positive, and I am happy for that. But, I don't want to be shocked again if I test positive with the further blood tests I had. He basically said if I walk everyday and bike ride that I am a healthy woman and probably it is not lupus. Will see. Not happy I have to wait 6 weeks for an answer.
I took my daughter privately to the lupus centre London he ( prof D'Cruz) diagnosed her there and then from her symptoms and family history Aunt with hashimotos and cousin with chrons he was great sympathetic and understanding he then transferred her on to his NHS Clinic at Guys London to be under him there the best clinic in Europe, even though we are in the north of England! My daughter has always looked well during the time of seeing him but that's made no difference to his approach to her. The best £600,00 pounds I spent it ended 15months of anxiety, fear and illness started her on the road to recovery well worth it!!!!
We had seen many consultants prior to this snd got no where when I said she couldn't get up the stairs at home or couldn't go to work they never replied it was like I was talking another language till we went to the lupus centre! If you want a 2nd opinion and you can afford it go there!!!
Thank you Larry...going to listen to this doctor, but I still ask for a copy of all the reports because I feel they don't tell you everything. Especially if u r slightly this or that. They seem to brush it off. I am ok with my symptoms. I can deal with them. One that bothers me the most is my kidneys. Being that they r scarred, I want to know what caused the scarring and how to prevent them from getting worse. Plus I want to make sure I am not a clotter. Don't want to get a stroke. Thank you for your understanding. Hope your daughter is doing well...
Hi Larrylad, I found your post interesting. I too am having trouble going up the stairs too. Since I came off the methotrexate and on the leflunomide and have had 4 steroid injections since March this year. I have been holding onto the bannister and going up the stairs is slow and laboured. Presently I have UCTD despite having a postive ana a few times and at 1/640 and 1/320 a clear malar rash, arthralgia confirmed, myalgia confirmed, inflammatory arthritis confirmed, mouth ulcers (confirmed) and photosensitivity confirmed. My ESR levels since going on the meds are within normal range (though I can flare up on ESR when its 8)! I'm told I have lupus symptoms. I know UCTD is also a recognised disease and my rheumy nurse will explain it is overlap symptoms. However even though my rheumatologist is very knowledgeable there are times when I really would like answers as to which others CTD do I overlap with. It would seem my symptoms have worsened and yet still stuck with this UCTD label. I am beginning to think there is no consistency here. I know all the CTD are much of a muchness. I think it was your stairs comment that prompted this rant...sorry!
Hi I have MCTD as well and have lupus anti bodies ,and have difficulty with stairs ,I have a bath lift fitted as I have trouble getting out of bath , I get really bad breathlessness , and have been told to unwell to work but it's not lupus ,every time I see a doctor I get a different diagnosis ,I have given up asking ,I just wait to see what they are going to write next ,last time I came on here they said I had UCTD then two weeks ago they put multiskelor conective tissue diesease ,they have told me I have sjorgrens ,and am waiting on biopsy ,I start a pain clinic in two weeks ,fingers crossed that helps. Christina.
It's ok trying to be positive once you have a diagnosis it's normal to want answers!!
I had an ANA of 320 for over 5 years without lupus.
Thanks Loretta. Wow...interesting.
Then what happened after 5 years...did it change?
I did have a "mini" stroke in March and my ANA went up to 1280 but still no lupus--do have APS though.
What is APS? Sorry, I am not informed of all the ailments assoc with this disease.
Antiphospholipid syndrome.
Loretta...does bloodwork show APS? My brother has to check the clotting factor throughout the year. It fluctuates, so sometimes it doesn't show. So strange these auto immune disorders how the symptoms change and come and go.
Yes, APS is detected through blood tests.
APS? ok I will look it up....
Hi to all!
My response is long but you will want to read this!!
I'm 22 and I have recently been diagnosed with ANA NEGATIVE Lupus. Started off with Raynauds Phenomenon. I was refered to a rheumatologist because of the raynauds and i have a strong family history of autoimmune disease. The rheumy laughed in my face and told me to go home and wear gloves and that nothing was wrong with me. I started to develop rashes/hives when I went into the sun, violent waves of nausea for months I couldn't eat, then terrible mouth sores ( I couldn't even swallow my own spit) that wouldn't go away. Some sores were open like canker sores and others were just painless nodules, nodules on my wrists, nose sores, that feeling you get right before you come down with the flu, and terrible headaches. i went back to the rheumy with my mother who has subacute cutaneous lupus who thought something must be going on. The rheumy once again "poo-pood" the fact that I could have Lupus because my ANA was negative, yet right after he told me that he recommended I go to a Lupus support group. I was so confused and furious.
From there I experienced sudden loss of vision, nausea, thinning hair, red painful knees, painful joints, muscles, and bones, fever,migraine, and numbness and heaviness in my arms all at the same time which landed me in the ER on several occasions believing I was having a stroke, the ER doctor diagnosed me with periphal neuropathy (which I later learned can be caused by Lupus) and suggested I see a hematologist for an MRI. Hematologist finds a blood clotting disorder called Protein C Deficiency and Factor Five Leiden Mutation. Hematologist finds nothing wrong with the MRI and sends me to a Neurologist. Neurologist found that something was triggering one side of my brain to mimick a stroke. The neurologist was appalled that I wasn't already diagnosed with Lupus. I was so angry and helpless.
One day all of my symptoms flared at the same time violently and they were coming in waves, I felt exhausted from fighting my symptoms and on top of that I was up all night with chest pain so bad I thought I was having a heart attack. My ribcage was also swollen and I couldn't wear a bra or seatbelt. Drove to my moms at 6am and told her I think I'm dying I need to go to the hospital. My mom, having sub acute cutaneous lupus assumed I was maybe experiencing pleurisy which she has had in the past and said before we go to the ER let's see if we can get in to the rheumy first. Rheumatologist wanted to see me immediately. The moment she puts the stethoscope on my chest I start crying and moaning in pain. She then proceeds to say you have Costochondritis (swelling of the chondral joints) very painful and then says I definitely think based off your symptoms and your family history you have SLE. Since the diagnosis of SLE andand even after starting plaquenil and prednisone i still have had days where i am completely debilitated in bed, some days i cant get dressed, shower, or cook myself a meal without my muscles and whole body feeling an overwhelming amount of physical fatigue.
Idk why some docs are so hung up on the ANA. Its only supposed to used as a screening not a diagnosis. I understand there has to be a protocol to follow in order to come to a conclusion but why do we as patients have to suffer in the meantime? Also I believe the "ANA" theory needs to be abandoned, its an autoimmune disease! No matter how much we learn about the human body there is still so much we will never know! We are very complicated machines. Doctors cannot rely on only what they learn from anatomy class and textbooks to diagnose and treat autoimmune diseases. Hence the reason why it is referred to as an "invisible illness" or "the great immitator."
My advice to those of you that are running into this ANA issue and fighting a stubborn, condescending, or ignorant doctor is to take pictures of the symptoms you are having that ARE visible, write down in detail the doctor you saw, the date, your diagnosis and how it was treated, as well as a bulleted and dated summary of your symptoms and the sequence in which they happened. This will show your doctor your serious and have all your ducks in a row. Also if your GP won't take you seriously, find one who will and who will fight for you! I left my old GP of 8 years because he was downplaying the pain I was in from Raynaud's and adopted an Internal Medicine doctor as my GP who believed from the beginning so ething wasn't right. He listened and fought for me and without him, I would be in a way worse place than I am today. If a physician laughs in your face, tell them to kick rocks! Be aggressive and find a doctor who will fight for you
a_Scot in reply to
haybelle wrote “ … rheumy laughed in my face …”
haybelle wrote “ My advice… take pictures of the symptoms you are having that ARE visible, write down in detail the doctor you saw, the date, your diagnosis and how it was treated … ”
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The last NHS rheumatologist I met “laughed in my face” when the conversation was heading in an expensive direction , ( “limbo“ is a zero-cost category ). That NHS consultant handed back ALL the photos of my symptoms, ( and matching reference* images ), which I had to force on him : he would not take them from my hand to his , so I had to put them on his desk.
So I'd suggest people take a witness with them into the consulting room when they hand over photos of their symptoms to an NHS doctor , ( whose job is to minimize the cost of illness to the state by any means necessary ) : hand a copy of each photo to the witness when you give one to the doctor.
The presence of the witness is pressure in your favour : what the consultant knew and when they knew it can be confirmed by the witness, even if the consultant hands the photos back to you in silence, as in my case . Otherwise it’s your word against the consultant’s that they were ever made aware of your photos of your symptoms.
If you cannot prove what a doctor knew, and when they knew it, then there is NO prospect of a successful prosecution for malpractice.
Being made vulnerable to successful prosecution may an make an NHS doctor treat you justly , rather than turn a blind eye to you and your photographic evidence in the name of perceived economy, which they are under pressure to do by their monopoly employer.
[ * you may be able to find reference images matching your symptoms on images.rheumatology.org and dermis.net/dermisroot/en/38... ]
THanks Haybelle... hope you are feeling better on the meds. So sad that you had to go through pain before anyone believed you. I have a feeling that ANA is tricky...I noticed precisely when things didn't feel right in my body. All along, the GP I was seeing called me depressed and wanted to prescribe me Zoloft. Isn't that nice?
in reply to Natura
Yeah, its unfortunate. Its too bad we have to suffer so much before we can get an ounce of relief. I coached gymnastics for years, in very good shape and the moment I knew something was very wrong with me was when this used to be strong body of mine suddenly could barely make it through taking a shower, little normal things became difficult chores. I believe as humans we all enter this world with intuition and when we feel something is "off" with our bodies, our gut is usually right. Hopefully your rheumy will be open minded in regards to your ANA, if not try another one and keep pushing forward for what you truly believe. Our bodies have ways of letting us know when something isnt right! I do hope its not Lupus! Best of luck to you and stay strong!!
Thank you haybelle...take care too!
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