Diagnosis

[NBtired]

Had 2 positive anticardiolipin tests but been told this means nothing- need 2 positive beta2 glycoprotein tests to have hughes is this true?

[Manofmendip]

Not as far as I am aware.

I was diagnosed on two positive anticardiolipin antibody tests bu a neurologist in Bath, in 2001, and this was endorsed by Prof Hughes too. I'm sure that Kate H will reply to you too.

Best wishes.

Dave

[eltrl]

This is incorrect. The Sydney criteria for APS (sorry can't link on phone but easy to find online/Wikipedia/HSF website) state that you must have 2 positive blood tests - EITHER anti-cardiolipin antibodies OR lupus anticoagulant OR beta2 glycoproteins - plus clincal evidence eg repeat miscarriage, a DVT or PE, a TIA or stroke. The criteria do say that the blood tests should be "medium or high" positive but drs vary, some (like Prof HuGhes & Prof Khamashta) accept low positives if the clinical picture fits (that's me).

[NBtired]

Yes that sounds like me too. Thank you so much for your help. Getting very confused and frustrated. Ready with more evidence for my next appt!

[Hidden]

I think some doctors quote the criteria and take from it what they want. I wish a more holistic approach would be taken!

[MaryF Administrator]

Sorry for your frustration with this, which is not unusual... I hope it irons itself out smoothly for you very soon. Mary F x

[k7pbx]

Sounds like time to shop for a real Dr.

[Hidden]

Please check out: hughes-syndrome.org/about-h... to find out all about the blood tests for aPL.

Not sure why you've been given duff information so please print out the Factsheet: hughes-syndrome.org/resourc... and take it to your doctor - this should help explain it to them.