Diagnoses

[catblue1865]

Has anyone been diagnosed with an autoimmune condition without having positive blood tests?

I've been trying in vain since 2006, got most of lupus symptoms but Ana either 1:180 or negative and other tests negative .

[StriatedCaracara]

Think people did in the past when they used 'More than 4 of 11 symptoms.'

There were seronegative diagnoses then. Not sure they happen much since 2019 Classification criteria, intended for research, came into use.

Opinion in the profession varies too.

Maybe see which NHS hospitals specifically list UCTD where specific immunological tests do not need to be positive.

I contacted London Bridge Lupus Centre, told them my situation, and they provided advice.

I have no health insurance but found them excellent and very pragmatic.

Also, their consultants are linked with different London Hospitals if you need NHS care afterwards.

Hope everything works out well. I prepared what I wanted to share and ask, and then contacted those I thought might help by phone or, if there was more detail to discuss, by email.

I did not want to fail again by having a second GP referral to a local hospital trust that on first visit had rheumatologist that made it clear my bloods were wrong as walked in the room.

NHS Centres of Excellence may be different, but still worth checking they accept and treat lupus-like UCTD.

[catblue1865 in reply to StriatedCaracara]

Thanks

[Suvi8901]

Hi there,

It’s not only the ANA test that is important for diagnosis of SLE! There are many others eg Anti-ds DNA (double stranded DNA) autoantibody test is another:

hopkinslupus.org/lupus-test....

The above is a respected website but bear in mind different labs use different criteria for á confirmation of SLE!

Keep challenging!

Bear in mind that most GPs and many other docs are not trained well enough to interpret blood test results for lupus and all its different presentations and manifestations. You will need specialist consultant and experienced medics! It’s a complex process.

Regards

[StriatedCaracara]

Figure 1 in this Cureus paper, on right side, lists blood tests.

Under this figure it says some cases will be missed and discusses briefly the case of sero-negative ANA.

Annoying advertisements appear as you scroll, so scroll with care. I found them very irritating, whilst trying to read a paper that was so interesting.

cureus.com/articles/162942-...

Table 2, in the right column, lists other significient checks that are missed by the 2019 Classification criteria.

[Shadow35]

Yes i got symtom similar to lupus and arthritis and finally got a diagnosis in december of spondyloarthritis. Start medication and it help a lot. The doc say it's not suppose to help for the rash but it reduce it of 80%.

[GloomyEeyore]

Yes. I have many symptoms of lupus but all my bloods were negative. I was diagnosed with Behçet’s based on symptoms. The oral and genital ulcers were a big player in getting the diagnosis.