Do you need to have a positive ANA to have Lupus ? I have all the symptoms of lupus plus fibromaligia, M.E, Pernicious Anemia & Vit D Defic

Do you need a positive ANA test before you can be diagnosed with Lupus ? Even though I'm showing classic lupus symptoms & also have fibromaligia, M.E, Pernicious anemia & vitamin d deficiency, my last appointment with my rhuemotogilst said she wouldn't do another ANA test as my doctor did one & it was negative ? I did get a nuclear bone scan although no results yet ? I don't know what the bone scan was for as its muscle wastage I'm suffering from but I do have extreme pain in most of my joints, I went on holiday there to Majorca with my family as my dad is currently suffering from pancreatic cancer and boy I didn't realize just how limited I am in my mobility :( although I always take rashes in the sun I still went out anyway, although the more clothes I wear the worse the rashes get & the leg cramps in both my calf's were herondous :( I also went to my dentist last week to try & get my damaged teeth fixed as I have gum disease, carries disease and she said because I suffer from a dry mouth that's added to my dental decay, sorry for the long post as I sit at my door with the soles of my feet burning so its another day without shoes, normally its because I've swollen so much I can't wear any, I'm so fed up, I just want my life back I've suffered so long & I don't want to be like this anymore. Excuse any typos I'm dyslectic so not the best at putting things into writing even though I'm remembering quite a lot today.

11 Replies

  • No. People can have nagative ana and still have Lupus. You can also have a positive ANA and still not have Lupus. ANA really isn't that great of a test.

  • Hi - sorry you are suffering. My last rheumy said you can only have Lupus if you have positive autoantibodies for it. He was very firm about this but I know others here disagree and I think I do too. I was diagnosed with RA rather than Lupus but up until my menopause I always had rashes to sunlight on my face and other parts. I now have symptoms and signs which tarry more with primary Sjogren's and am hypothyroid. I come to this community because Lupus is such a broad disease that many have similar symptoms to mine. I have burning soles on and off - it was how my RA started. Whether you can get a diagnosis of Lupus without a positive ANA depends which part of the U.K you live in.

  • When I was diagnosed they said I I had to have 3 poss tests in 3 consecutive months plus symptoms.

    Sadly, I did

  • Hi jacqui0x,

    Approximately 95% of people with lupus are positive for antinuclear antibodies, so it is rare to be diagnosed if they are negative, but it does happen. If you are unhappy with your current consultant's diagnosis and treatment plan it may be worth asking your GP for a referral to somebody else for a second opinion? If you let me know what area you are in I can provide you with information about any lupus specialists who may be near to you.

  • I'm in the Glasgow are, I still don't understand what the nuclear bone scan was for ? Sorry its a short reply my eyelids are extremely swollen & my eyes are bloodshot again.

  • Jacqui0x

    This has absolutely nothing to do with this post and issue but, I'm from the southeastern part of the U. S. In the state of Alabama my last name is Glasgow. My ancestors were from Glasgow Scotland, I think it is neat to see a post from there.

    Sorry about rambling and nothing to do with the issues on this thread.


    "The Barefoot Gardener"

  • Hi jacqui0x,

    Dr Asad Zoma is a lupus specialist at Hairmyers Hospital in Glasgow. It may be worth asking for a referral to him.

    There is some information about bone scans on this website -

  • I live near Carlyle, IL. Do you know of and lupus specialist near me? Thank You :)

  • I am ANA Negative. It's taken years to be diagnosed but my rheumatologist has told me I 100% have lupus due to my many symptoms and response to medications. I have 9 out of the 11 criteria for the disease and a text book malar rash. I have always know that there was something wrong with my health, probably since the age of 15, now I have a diagnosis and although the diagnosis is totally pants, in that it is lupus at least I now have a specialist team looking after me, who are actually helping me and not treating me like an idiot.

    ANA Lupus exists 100%. That's not just from me, it's from my Specialist who is head of their field in a very large and respected teaching hospital.

    Don't be fobbed off, best of luck x

  • I also have 9 out of the 11 criteria, seeing specialist tomorrow with blood and urine results which appear clear but she did tell me regardless of the results it's likely lupus, she was testing for other disorders before prescribing treatment

    Like you, I've always known there is something wrong since teen years

  • Hi I have had 7 + positive test now in a row for lupus but my rhumatolgist still says I don't , my gastroligist, oral consultant and my gps all say it's lurkin there but rhumatolgist say no he says I have sjorgrens and fibro although all test I have had said no including lip biopsy ! So GP is sending me to different rhumatolgist! He's so fed up with him , and his attitude, the stubborn rummatolgist has given me every diagnoses you can just about think of but I have had seven different consultants altogether over the last 4 years and they all have suggested lupus ! He says I don't present to him ! I get rashes , allergies, dry eyes mouth , nose ears , sores in mouth and nose , fatigue , joint pain In wrist and dislocation of joints , breathlessness , bowel , bladder , kidney , liver involvement , I need to use a wheelchair while out and about to be honest I forget so much and others have to remind me ! I truly think these rhumatolgist are a law unto themselves , I have suffered since childhood but rashes were put down to pysriosis , chicken pox , heat rash , prickly heat , some sort of pox (1969) I am now 54 my body can't cope any more and it won't play , my GP says I know my body , and to be gentle with myself , he says medical science is only just over 100 years old , and as doctors they truly know very little about the immune system ! I believe my grandmother had this , I only remember her in pain and stuck in a chair and dishing out orders to what needed to be done , including taken on the care of me at the age of 2 1/2 , so if doctors needed to be seen , after the age of 6 I took myself ! No joke rural area , he would then pop round and speak to my grandad as they were friends if needed or a proscription given to me and I would take to chemist !

    Good luck but my advice is don't stress , just listen to your body my gran was 94 when she died and had been on a 100 distalgieics a week ! Beggars belief really ! Be kind and gentle with yourself , and if your not happy ask for a second opinion!


    Chris xx

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