Sero negative

[donnabrain]

Hi.

Can I ask how many here are sero negative, and if it hindered your diagnosis.

[DJK99]

Hello. It did for first 6 - 12mths, then I met the top consultant at the hospital who diagnosed me with Mod SLE on the spot. That was 3yrs ago. Sadly, since,and with me banging on every review about me not being ANA etc positive/only borderline positive for anticardiolipin Igm, he downgraded me to “lupus like syndrome” last Autumn - I felt it was due to Covid/vaccine/being utterly stretched due to working on Covid, not knowing what to do about some of my persistent nasty symptoms - but he won’t budge on any reason other than being seronegative. I have a ton of clear symptoms, and v low complement 3 and 4 plus autoimmune neutropenia. He has referred me to Lupus Centre at St Thomas’s Hospital in London. What are your blood results and symptoms? Where are you at? D

[donnabrain in reply to DJK99]

I was under the lupus unit at St Thomas and then when it moved to London bridge, with a diagnosis of antiphospholipid syndrome. Discharged a couple of years ago.

Eye specialist says I have sjorgrens, but lupus unit say I don't.

Bloods are always negative

[DJK99 in reply to donnabrain]

Yep, not holding my breath. Especially now! I was diagnosed with Sjogrens by eye hospital but the lip biopsy disagreed. Although my rheumy has saidcsince I prob have it and Behcet’s. That was 3yrs ago and my eye symptoms (and the rest) are pretty bad now so on waiting list for dry eye specialist doc for punctal plugs. Methotrexate helps a lot but tons of issues.

[donnabrain in reply to DJK99]

Oh, sorry, symptoms. Fatigue, brain fog, swellings, rashes, sores, dry eyes and mouth, gut issues.

I used to have a sleep disorder, but that seems to have sorted itself out, and I do get balance issues when flaring sometimes, but that's OK at the moment.

I also have thoracic outlet syndrome, so get spasms in right arm and hand.

I used to have a lot of numbness/ pins needles, but that seems to have resolved too.

[DJK99 in reply to donnabrain]

Why are you asking this question? Has it happened recently?

[donnabrain in reply to DJK99]

No, not recent.Have been unwell since 2006, and was under lupus unit until a couple of years ago.

Have recently been referred ( by eye specialist) to a new rheumatologist.

Have just received appointment.

[DJK99 in reply to donnabrain]

I see. I’m sure you’ll be well prepared with photo evidence, diary etc of symptoms and fully genned up on current guidelines for diagnosis - and read articles on most up to date med research on seronegative diagnoses. Please look at some of my posts for support/info. Hope it works well for you ie that you get excellent support and outcomes.

[donnabrain in reply to DJK99]

Thank you

[Gmagolf]

Was diagnosed with APS three years ago. Rheumy put me on plaquenil. Helped a lot. Positive ANA but last test it was normal. Last six months I’ve been battling terrible rashes and also have Malar rash. Now rheumy says I have lupus.