Was advised by another APS patient to see this "fantastic" heamotoligist here in Perth Australia....so off I went with my referral. Outcome total and utter disbelief of mine and my GP's part.
My referral letter stated that I have had numerous DVTS and four miscarriages. Some prior to 2007. It also stated that I have had a subclavian blood clot in 2009 that went undetected and had created collaterals as it had almost blocked the vein. It also stated that I have had one PE,one TIA, and MRI that showed signs of numerous mini strokes, a clot in my leg, a bleed from my kidney that required transfusions, a probable TIA in April (probable as they couldn't find it as I took an allergic reaction the the contrast dye and had to have the procedure stopped so they could get me breathing again). I suffer massive headaches, have days when my legs seize and I walk like a nana..(no offence to any Nana's out there). I also create blood clots regardless of anticoagulation therapy. I have issues with my vision and my GP had been treating me for catastrophic Hughes.
I arrived at the new specialist who asked a few questions...ordered a $500 blood test and said he would get back to me with the results.
The specialist wrote a letter to my GP stating that I tested negative for APS and that due to me having no venous issues since 2007...that he felt I didn't have Hughes...he did state that all my symptoms are the same as Hughes but because the tests were negative he thought it wasn't. He did suggest I stop Warfarin and clexane and just take asprin every now and then..WHAT!!!!!!!!!.. For me the outcome was...a long wait, a loss of $735 and a huge amount of anger.
My GP has said that the guy obviously knows nothing about Hughes and seems to be unable to read either.so..........My GP said that if I stop the warfarin etc I may as well put a gun to my head as I produce blood clots at the drop of a hat and that the specialists advice could kill me. My GP was surprised that he didn't know anything about sero negative Hughes.
My GP is gathering all my info and history and test results and is going to send them all to Professor Hughes and is going to ask for help. I hope that we can get some advice from the UK. I feel totally blessed to have a GP who has attended one of the Hughes Syndrome lectures in the UK. I have more faith in my GP than ever and now fully understand the frustration of having this fickle condition.
I am going to keep my head up and keep looking forward and hope that maybe the Prof may have some new things we can try.
So....can I get off this Merry Go Round??? I don't like it