I have had multiple DVTs, multiple Pulmonary Embolisms and multiple TIAs and must be on anticoagulation for life but my APS blood tests are negative. I had two positive Lupus anticoagulant tests last year but my most recent test was negative again. I have so many symptoms that point towards having APS or lupus, like chronic anaemia, chronic fatigue, clotting abnormalities joint/muscle pain, face rash, sunlight intolerance etc but I still get negative blood test results.
I have very recently been seen by the Thrombosis Team at St Thomas' Hospital and thought that I was finally going to get some support for all my clotting issues but because I didn't tick the necessary blood test result boxes for APS or Lupus, I was told to just keep taking my Apixaban and come back in three months time.
I'm about to have an operation at St Thomas' to remove my IVC Filter (clot catcher), as it has tilted and pierced through my Vena Cava vein. My vascular surgeon also believes that its covered with and embedded in scar tissue, making it very difficult to remove as it could tear and damage my vena cava. I thought that the Thrombosis Team at St Thomas' Hospital would support me through this operation, not simply tell me to come back in three months time and I feel so incredibly let down.
Clots on the lungs and brain can be life threatening and so surely I should be looked after and managed as closely as a person with APS?
I would really appreciate any comments or advice, has anyone else been in this position, all the symptoms of APS or Lupus but negative blood tests? (I should mention that I was diagnosed with Ehlers Danlos Syndrome type 3 seventeen years ago.)
Thanks so much in advance for any advice, Claire