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LUPUS UK
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Positive Ana 1:320 now it's negative

Hi all. Just back from my rheumatology appt feeling quite disheartened 😒 I had a positive Ana test 6months ago by a private rheumatologist and have aching joints, chronic fatigue, hair loss etc. Today I have been told all tests have come back normal, bloods fine, bone scan fine by NHS. Am told I have fibromyalgia but I can't help feeling that doctors use the diagnosis of fibromyalgia rather than further investigating other posibilities as it's easier. Also they make you feel a bit like it's imagined pain as your body is more sensitive- I hate that, I know my pain is real!!! Am exhausted trying to just get a firm diagnosis. Any help would be great- do I just accept the fibromyalgia diagnosis or keep pushing?

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Hiya.

Mine has changed up and down, positive then negative. It all depends on what testing kit they use.

I have had blood taken at the same time and been tested in different labs and come out with two different results.

Did you get any other positive tests when your Ana was positive?

L x

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Hi Bacardibabe76

Thanks for the reply. When I had the positive Ana as far as I know all other tests were normal. From reading it seems a false positive reading would not be 1:320 as only 3% have that. Surely it must mean something but according to rheumatologist it's not significant. I have extreme fatigue, painful ankles and wrists, suffer low grade fever a lot and my mood at the moment is very low.

I just don't want to be palmed off!

D x

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Hi DaniDC,

You are correct that in some cases a diagnosis of fibromyalgia may be given incorrectly when someone with a connective tissue disease (like lupus) is presenting with no positive blood markers. There is also a significant overlap of these conditions with around 20% of people with lupus also being diagnosed with fibromyalgia.

If you are unsatisfied with your current diagnosis and treatment plan then it is definitely worth pushing for a second opinion. It may be best to request a referral to a rheumatologist who has a specialist interest in lupus and connective tissue diseases. If you'd like to let me know whereabouts you live I'd be happy to provide you with information about any lupus specialists we know nearby.

If you'd like more information and advice about getting a diagnosis of lupus you may be interested in our blog article here - lupusuk.org.uk/getting-diag...

We also have a free information pack if you'd like to learn more about lupus and LUPUS UK - lupusuk.org.uk/request-info...

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Hi Paul

Thank you for the reply and the information. I do feel like something else is going on as I have flare ups where certain joints hurt for a while and then they settle down. I live in sidcup Kent so if there is a specialist nearby I would be interested to know.

Thanks again

Danielle

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Hi DaniDC,

I have a feeling your nearest specialist may be Dr Kaul at St George's Hospital in Tooting.

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Hi Paul

Thank you for that. I will ask if I can get a referral letter sent to him and see what his opinion may be.

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NHS changed their ANA test from HEP2/IFA Method (which is gold standard) to CTD screen in 2015/2016. If your result is speckled, it's a known fact the newer cheaper test doesn't always identify this pattern. The NHS can do the HEP2/IFA Method if the consultant specifically requests it. Some say the result also fluctuates depending on disease activity although they never use it to measure this. If they won't listen, when you're feeling very unwell, I'd do a private ANA test (HEP2/IFA) then & see what the result is (or make them do it!).

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I was also told it comes and goes depending on disease activity.

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Hi LH44

Thanks for the reply. That's very interesting as my private test was positive 1.320 speckled/ homogeneous and nhs apparently negative. This makes sense now that nhs use a different, cheaper testing method. I will see if I can repeat the test to private standard

Danielle x

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