Tests

[Pmeh]

If I have a negative test for sle but alot of symptoms and already have discoid what can I do as I've seen this with alot of people it's taken years to be diagnosed and negative tests took me 2 years to be diagnosed with discoid

Thank you

[Oshgosh]

I think the waiting is the worst.

My presenting problem was with my lungs.

I did wonder why they kept taking so many bloods.

When the rheumatologist told me I had lupus it was a shock,I thought Ihad. RA.

When I researched lupus,loads of things made years,all treated on a stmptom by symptom basis.

I’m so sorry i Cant advise you what to do.

It seems to me that in the world of lupus/RA/lung things move slowly.

Take care and stay safe.

[Pmeh in reply to Oshgosh]

Just the reply helps thank you hope your also safe and well

It's only since on the lupus page that alot of things I suffer with all come under sle which my discoid wouldnt course I get a deep pain in my chest abit like pleurisy when I breathe deep cones and goes and they told me it was a blood clot then a pulled muscle then it was my lupus but discoid doesn't effect the lungs to the point in treating myself at home because I get nowhere but I'm taking a stand now because I've had enough x

[happytulip]

Do you go to a lupus centre of excellence? Most lupus centres (but not all) recognise that you can have SLE and have normal bloods.

I'm in that catagory!

[Pmeh in reply to happytulip]

Hi no I dont what is that I've never heard of it lupus isn't really talked about ive never even been offered any guidance apart from a computer link thank you for the reply x

[happytulip in reply to Pmeh]

If you get in contact with lupus UK they can tell you where your nearest centre of excellence is. You can ask your GP to refer you to that team. Your GP might not agree but you can at least ask. And it's your choice where you are referred to x

[Pmeh in reply to happytulip]

Thank you will definitely ask x

[heatherevans28]

I would ask for a referral if you think you have enough of the symptoms. They can assess whether you meet the medical criteria for each symptom or not, and potentially whether its another condition. Were you diagnosed with discoid lupus on biopsy alone?

Also be aware that systemic lupus mimics a lot of other conditions (that's why it can take years to diagnose) so it might be that you have one of those other conditions. Having positive bloods is obviously dangerous but it does make diagnosis relatively straight forward.

All the best and I hope it's not lupus for you x

[Pmeh in reply to heatherevans28]

Thank you for your reply Yes I was diagnosed through biopsy took ages tho and he talked about sle but wasent his department and I just got fed up and left I've now been refured too rheumatology but I can imagine the wait is very long .