Has anyone been diagnosed with negative blood tests ???

[Rosebud213]

Hello everyone, this could possibly be a really long post but will try to keep it brief. Early diagnosis mild Lupus in 1997 and 2001. Ongoing symptoms of miscarriages, hair loss, seizures, chronic kidney disease, enlarged liver, pleurisy, heart failure, cold sores, vitamin D deficient and painful aching joints.

Over the years have gone to my GP with above symptoms and more and recently Nephrologist thought maybe it could be Lupus. Recently admitted twice with periods of unconsciousness.

So fed up waiting for various appointments and decided to go privately, however have been told it could be 50/50. Most recent tests negative ANCA, ANA

My questions is has anyone been diagnosed without positive blood tests. Currently on Amitriptyline which is helping slightly but leaves me a bit groggy.

[Hidden]

About 10% of blood tests for lupus come back as false negative, so the specialists at Guys don't rely upon them alone. They would also take a history of symptoms - and judging from yours they are pointing very much towards lupus.

Have you also been tested for Anti-phospholipid syndrome (APS/sticky blood)? That might be the cause of the miscarriages and a couple of the other symptoms. 1 in 5 lupus patients also have APS, I do and it's very treatable. It's worth checking.

You could ask your GP to refer you to the Louise Coote Lupus unit in Rheumatology at Guys Hospital, they see people from all over the country. Or if you wanted to try a private appointment I would recommend Professor David D'Cruz (who diagnosed me after 4 years of misdiagnosis), he works out of the London Lupus Centre near Guys hospital, contact details on our website: lupus.org.uk/contact/find-a...

Good luck.

[Rosebud213 in reply to Hidden]

Hello, thank you for responding. I was checked for APS some years ago but came back with a diagnosis of Von Willebrands Disease ( a clotting disorder)

I have also gone to the London Lupus Centre recently mainly for a consultation having spent nearly 2 thousand pounds already on private diagnosis for the crazy other things which are happening. I saw a Professor Christopher Edwards who has said its a 50/50 but until I have blood tests cant say for (cant afford to have those privately but had some done a few weeks ago after having unconscious bouts and was admitted to hospital).

I'm sure which I thought the symptomatic history spoke for itself.

He prescribed Amitriptyline 30mg which helps slightly. .

Currently having such bone pains, my hands today are swollen and my knuckles are so painful unable to grip anything, knees and left shoulder is really bad. With the sun out today my face is itching like no ones business.

Spend lots of time crying through frustration and pain. I am due to see Rhemi at the end of Oct at Guys just really need pain relief and some answers.

Due to chronic kidney failure ( stage 3) but gfer going down 50 and creatinine going higher 103 can't take normal anti inflams. and blood disorder cant take aspirin.

[ancilla]

I have sero-negative SLE. My ANA is nearly almost negative. My anti ds dna is only ever about 10-20.

I have a textbook case of symptoms otherwise.

I was diagnosed by the Head of Connective Tissue Diseases at the Royal National Hospital for Rheumatic Diseases in Bath.

He said seronegativity is real and he sees it often. There is hope for all those who, like me, have been scoffed at for having a negative ANA.

[beehopeful]

I too was diagnosis without the ana results showing. I hope this helps you.

[Ginge1234]

I was diagnosed by DR Hughes 20 years a go and have negative ANA but have lived with n managed flares - I recently have been in a flare for 1 year and my consultant refuses other treatment (I’m on hydrolraquine amitriptalin) and tried steroid injections which last 3 weeks. But this refusal has also made me feel like a fraud n my consultant now seems to use fybromyalgia as the cause ? I think personally because the ANA negative he uses this idea it’s maybe maybe not to prevent expensive treatment options ? That’s my gut feeling ? So who believes symptoms alone ? I know my body and Dr Hughes was top DR ! I wish I could get treated with more believe and get some quality of life back !!