Just want some advice really
I'm 31 was diagnosed with hughes 7 years ago after a long struggle with multiple rare health problems many DVTS PE's ultimately I ended up with a gangrenous leg at 24 which required amputating it was only a plastic surgeon who said i was far too you g to have all these problems who suggested a full thrombophilia screen which was came back positive for ACL and LA with very high titres . Since then my health has been ok ish warfarin control has helped . This year I have had three major brain surgeries for movement disorder and extreme pain the last one was on the 2/11/2012 so I am only 6 weeks post op.
Recently I have been diagnosed with optical neuritis with peripheral vision loss and colour vision loss and I have been experiencing TIA'S on a weekly basis . We all know these problems are related to hughes but to make sure I contacted my neurosurgeon who scanned me to make sure it was nothing post op causing the problems which is the case these problems are not related to brain surgery .
So I contacted my anti coag nurse and asked for appointment to see my haematologist but he says I have not got one as my INR is well controlled at 2.5 plus the haematologist I was allocated too has now retired . As the days go by I am feeling more and more problems coming on with no one to turn to .
Is this my hughes getting worse or resistant to warfarin ???
Where do I go from here ??