I'm new to this site and think its brilliant! I wonder if anyone else has been through a similar experience or can give advice? I am a former paramedic and clinical advisor who has suffered multiple lupus like symptoms and chronic pain syndrome since bilateral carpal tunnel surgery and one years stormy recovery period (including 6 months unknown virus) in 2005.
Diagnosed fibro, chronic pain syndrome. I was investigated for lupus in 2010 at st thomas' but told it was not lupus due to ana despite multiple lupus symptoms. I did have what I believe was an undocumented TIA approx 5 years ago while on hols in a remote part of Scotland, unable to get to hosp. In last 6 months I had two cardiac incidents, classic MI (heart attack) presentation, but ecg etc normal. Further investigations revealed old endocarditis, aortic valve regurgitation and soft plaque in LAD. Interestingly repeated bloods came back with APL, ACL and lupus anticoagulant. I just had my first appt with Prof Beverly Hunt at St Thom. She told me I was a classic candidate for Hughes syndrome and had lupus like symptoms (lots of Hughes symptoms including migraines and teenage growing pains). She was reluctant to give definitive diagnosis I believe due to the fact that I did not have a documented thrombosis, although had undocumented TIA and two cardiac events. She said the final indicator (APS or Lupus or both, not sure) would be if the Plaquenil she has prescribed works. She also mentioned putting me on anticoagulants. I don't understand how medication can form a diagnosis for APS. I feel left high and dry, sure I have Hughes at very least and I'm concerned if I have to go to hosp for anything in future a lack of diagnosis will cause probs. I will ask for a telephone consult to discuss further b4 I see her again in June. Wondering if I can get referred to Prof Hughes on the NHS for a 2nd opinion re APS if need be? Does anyone know if this is right? It doesn't seem right that I may have to wait till I have a clot to fit in with the Sydney criteria for diagnosis APS.