Trying to get a diagnosis

[LexxiiB]

Hi Everyone,

In 2014 after the birth of my son and 9 months of complaining to my doctor, I was finally diagnosed with Hypothyroidism. This was treated to bring my levels back to “normal”, but I never felt like I recovered. Over the course of the last 8 years I have complained and complained about general feeling of being poorly, exhausted, having a recurring nasty rash etc etc.

Since February 2021 I have been suffering with chronic pain in my breast bone. I had bloods which came black clear, and chest X-ray which also came back clear. Then my doctor ordered three further tests two of which were fine, but the DS-DNA test came back positive.

The doctor said it’s an indication of lupus and has referred me to a Rheumatologist. My concern / question here is with my symptoms (chest pain / stiffness in ankles, both of which are worse in the morning / skin rash / reflux/ mouth ulcers and extreme exhaustion) and this positive blood result, am I likely to be further fobbed off, or does this blood result coupled with my symptoms give enough to finally make the diagnosis of lupus? Can you have this positive result and be told you don’t have lupus? I just don’t think that I can stand the thought of leaving that clinic without answers and try to continue to find the strength to fight….

[Insomniacette]

The good news is that your GP referred you. That's half the battle. A rheumy might want to observe and test for a while before diagnosing which is fair as they won't want to give you a wrong diagnosis and running their own tests is a sensible approach. You wouldn't want a lupus diagnosis if it is actually something else so letting the rheumy investigate, run some tests and observe for a bit before giving a judgment is a good thing. So if you don't get an immediate diagnosis don't be disheartened. But you're on the journey and positive dsdna means it's likely you won't be dismissed out of hand. Hope you get answers!x

[Roarah]

Having a positive dsdna plus symptoms is usually easier to diagnose than a positive Ana without other antibodies but there is still a criteria system used for formal diagnosis and to determine proper treatment options. A positive dsdna is often seen with more organ involvement and more serious lupus and is more specific to lupus than just a positive ANA. Hope you find a treatment protocol that helps.

[KayHimm in reply to Roarah]

Actually a positive ANA without specific antibodies is often considered a false positive. I just read a study after hearing so many patients here being told that even with the positive ANA they don’t have autoimmune disease. One rheumatologist turned down a GP’s referral.

[Roarah in reply to KayHimm]

Sorry, That was what I meant, that ANA is not very useful in lupus diagnosis but dsDna is more predictive.

[KayHimm]

When the test is used properly it should really confirm what the doctor suspects. ANA should not be used as screening tests. In other words, you should have a high suspicion of lupus to run it.

With that in mind it would be highly unlikely for you to be « fobbed off. »

Your ANA was positive? The anti DNA is part of the ANA. Both should be positive.

Best of luck with this

K

[Mlml40]

I have positive ds dna and regularly negative ana, it was positive in the past but went negative. I have been diagnosed with lupus 3 separate times over the past 20 something years, any time I went into remission there was doubt cast on the diagnosis. However, the last time I was told that the diagnosis was definitive as I sat there with symptoms on show (sun rash, swollen joints and record of low wbc from my gp) my rheumatologist said that they always knew there was something auto immune but just couldn't be 100% certain it was Lupus because I also have eds, even with the anti ds dna.

[LexxiiB]

By way of an update, rheumatology have rejected my referral, doctor requested a ds-dna test, but not an ANA. I can’t have a referral apparently with a positive ds-dna but no ANA result (coupled with a heap of symptoms) I’ve been told because of the shortage of blood test tubes that I’m not able to go and have this test until December at the earliest. Does anyone know where the best place would be to get this done privately? At least that way I will know if it’s worth pursuing this in December or whether I should give up and accept that I live a life of unexplained pain and that’s the way it’s going to be.