I have symptoms of lupus but nothing showing on blood tests, at the end of my tether!! Rash, fatigue,hair loss,swollen lymph nodes in neck

[Loulou1972]

Muscle and joint pain, react to the sun with it itchy rashes, antihistamines don’t help, ulcers in nose and mouth, I feel no one is listening neither rheumatologist or gp xx 😓😩

[Tiggywoos]

Hi LoulouSo sorry to hear of your horrid symptoms and suffering ..

Have you asked the Gp or rheumatologist what they think is causing this if it’s not lupus ?

Take care xx

[Nelly10]

Oh no!!! I feel for you I really do! I have the same symptoms / not the mouth ulcers though. My dermatologist upped my meds and told me to stay indoors when the sun is at its strongest. I try but I work and have 3 children so hard to do that! Your dermatologist might be more understanding - I am guessing you have one - if not - ask to be referred.

[GloomyEeyore]

Maybe you could ask your rheumatologist about Behçet’s? This is what my rheumatologist believes I have and it doesn’t show in bloods. nhs.uk/conditions/behcets-d...

[robertbob]

HiSorry having such tough time. And hope things get sorted out for u soon.

A significant percentage of people have an autoimmune disorder without it showing up in the tests conducted. This can be because the auto-antibody isnt showing up at that time in the relevant test but might show up later in the same test or that the relevent test has not yet been conducted. And ofc someone might not have an autoimmune disorder.

The usual autoimmune test that GPs tend to conduct first and sometimes last is the ANA one which tests for a range of auto-antibodies including I think the most common lupus one.

But can be negative on ANA and positive on ENA (which tests for a different selection of auto-antibodies).

I was negative ANA and negative ENA and then on a later test I had became positive ENA but still negative ANA. Ive now been diagnosed with Sjogrens.

It might be worth asking for ENA test if not yet had one. Could also ask about sjogrens. I had hair loss, fatigue, swollen glands, muscle and joint pains etc. But of course so many things can cause these.

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R

[Hidden]

My diagnosis of Stills Disease (RA) has never given a positive result even during a flare in hospital. Specialist said they diagnosed by exclusion as with many AI. It does mean no matter what’s wrong they tend to attribute it to Stills.Good luck, keep a diary of events. 🙂

[stiff19]

Hope you get some kind of answer 🙏