I have had APS since 2002. I have had 3 strokes, 2 amaurosis fugax, and hundreds of TIA's. I have seen numerous specialists about my condition, to include my current treating physicians at Johns Hopkins. I used Warfarin for a couple years, but had to switch to injection LMWH (low molecular weight heparin) back in 2004 and have used it daily since. There was also question of my having CAPS (catastrophic APS) at one point with TIA's occurring hourly...for which I was in ICU receiving every other day plasmapharesis.

Yes, you are correct that some doctors vary on criteria, but not that much (in my experience). Some are more conservative then others in diagnosis and treatment approach, but I have never had one say that a thrombotic event is not required in order to treat (with exception of miscarriage). The only other exception is use of baby aspirin. Actually, the doctors that I have discussed this with express concern to treat with anticoagulants (which carry significant risk) without some documented thrombotic event. And as a patient, I would personally be concerned to take such a drug without confirmation.

I noticed that the APS foundation link you provided doesn't even have any mention of diagnostics or criteria (not that I could find). I have tested negative a couple times over the years, but it is actually common for this to happen. However, no one would ever consider taking me off anticoagulation even if I tested negative for a couple years. I can't even remember the last time it was checked as no one questions the diagnosis.

But at the beginning of symptoms (which can be caused by many things) it is important to define the proper Dx before implementing a course of blood thinners, that have significant risk of not just bleeds, but death in some instances. Criteria are set forth to have some guidelines for doctors to follow. The standard for APS is two positive labs at least 6 months apart (although some might vary on this time period) AND a thrombotic event. I can't imagine people being Rx'd blood thinners with just family history of stroke and therefore I would not expect to see patient Rx'd the same for just a lab showing antibodies (which many people can have positive). Like I said, people are not Dx with Lupus or Sjogren's with just a positive ANA...same goes for a positive aCL. Of course symptoms play a role, and if TIA's are a part of those symptoms, then that would be considered.

I'm not actually a stickler for criteria in all cases, for all diseases, as people are all different with presentation of any disease. But there must be a standard to go by and I think the standard for APS is reasonable...with exceptions of course for some signs of thrombosis, even if the events cannot be documented.

I don't always explain details of my conditions when I speak on this site. But in this case, thought best to let you know that I do have some experience with this condition and have seen numerous specialists at the best facilities in the US (Dallas, Mayo and Johns Hopkins) and one of my doctors actually knew and had spoken to Prof. Hughes (who this condition was named for) at an international conference.