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Is it possible to have positive lupus test but not have lupus?

(10 Posts)
lisad123everybodydancenow Thu 25-Apr-13 15:01:16

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shitmagnet Thu 25-Apr-13 15:03:13

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lisad123everybodydancenow Thu 25-Apr-13 15:13:47

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Badvoc Thu 25-Apr-13 17:50:57

I had a positive blood test for lupus but the rheum said that they don't dx and hat alone and I had no other symptoms (?)
So dx with fibro instead (?)
I know it's getting worse.
I need to go back to the gp.

lisad123everybodydancenow Thu 25-Apr-13 18:39:32

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Lonecatwithkitten Thu 25-Apr-13 22:51:43

Did this test for anti-Ro and anti-Lo as well? There are a group of conditions similar to lupus including sjorgrens syndrome and mixed connective tissue disease that have Symtoms like yours. However, you need a really good rheumatologist to differentiate them with several very specific blood tests.

Lonecatwithkitten Thu 25-Apr-13 22:54:54

Oh yes photosensitivity and mouth ulcers are a particular feature of this very specific group of autoimmune diseases. My mum has sjorgrens and I have mixed connective tissue disease we both take hydroxchloroquinine that has to be prescribed by a rheumatologist initially, but is life changing.

lisad123everybodydancenow Fri 26-Apr-13 06:47:38

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mankyscotslass Fri 26-Apr-13 07:05:37

Lupus does come in peaks and troughs - my mum has is, she has been diagnosed for 7 years.

She has periods where she is comparatively "well", and then periods of crisis, when she has extreme pain and lethargy, despite medication.

She does have severe symptoms the, it has badly affected her nervous system, brain and heart, to name just a few of her problems.

When she is well and the medication is balanced she finds it manageable.

LackaDAISYcal Fri 26-Apr-13 09:44:37

All the symptoms sound very similar to mine Lisa; I was dx'd with mixed connective tissue disease about 18 months ago, mainly from a positive ANA, positive RNP and the symptoms I was having. All the lupus specific tests came back negative or borderline, but they are treating it as lupus as that is the majority symptoms I'm having, but I do have sjogren's and scleroderma symptoms too that come and go. I take hydroxychloroquine as well, and as lonecat says, it was pretty life changing for me as before I started treatment I couldn't get out of bed. Now I'm back at work 30 hours a week and leading a pretty full life and successfully managing flare ups when they happen. Though I have to stay out of the sun as I go an alarming scarlet colour and get bad livedo reticularis on my arms and it can make me feel very unwell indeed. Thankfully not too much of an issue in this country though wink

There is lots of good advice on the Lupus UK site but unfortunately from reading the forum there is a lot of uncertainty over diagnosis and the journey to get one can be quite long.

there is information on blood tests Here

The one thing I would say is ensure that you get a referral to a good rheumatologist; my GP is pretty amazing and referred me very quickly after the fist set of dodgy blood tests. If I hadn't had that referral I think I would still be struggling tbh.

Good Luck, and I hope you get some answers soon x

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