I'm hoping to get a diagnosis for my wife (F, 33). We have an appointment with our GP on Wednesday and I'm just trying to get everything straight before we see him. The booklet on the GHIC web site was a huge help. I'll be taking it with me. These are the things that lead me to think Hughes Syndrome is a likely scenario.
- Massive pulmonary embolism (Nov 2015), "unprovoked" - but was preceded by a two-week long migraine.
- Chronic headaches -almost daily - for at least ten years. They were enormously improved during the six months she was on blood thinners (Xarelto/Rivaroxaban).
- Two seizures, one in 2002, one in March 2017. No diagnosis of epilepsy. The one in 2017 was preceded by a severe migraine.
- Cold extremities.
- Occasionally angina-like chest pain (this is new since the PE). Often seems to coincide with a headache.
- A period during the summer of 2017 with visual disturbances (blurred/double vision).
- Occasional severe abdominal pain after eating.
- Probably a fractured metatarsal in October 2017 (never diagnosed, but seems likely in retrospect).
- Not the greatest memory!
Two sisters have frequent headaches, one of them has had thyroid issues (Hashimoto's/cancer). Her mother had a (fairly small) PE and numerous TIAs.
Looks pretty clear cut to me, the only snag I can see is that she was actually tested for APS after her PE and all the tests came back negative. However, I've now read about seronegative APS.
My main hope with the GP appointment is that he'll agree to let her go back on the Xarelto while we wait for an appointment with a rheumatologist. We're in Vancouver, Canada, by the way, so we're fortunate to have a pretty good health service.