I've only just found this site and have been reading all your amazing stories for the last couple of days so I thought I would share mine.
Ten years ago it was found that I had some blood disorders - lupus anticoagulant and anti dna antibody. It was found by accident and was told to by the doctor to try to forget about it as loads of people have these abnormalities and nothing ever happens to them. Even though my mother has had 3 clots and my grandfather died from a PE.
I had two more children in that time and had pregnancy related thrombocytopenia (no platelets) which was scary when I had an emergency casearian with my third and last child as she was undiagnosed breach and was 10lb 6oz!
I had lots of problems with my kidneys over the years and have kidney stones and recurrent UTI's which are now treated with long term antibiotics. I have ovarian cysts which are causing me problems and have had cellulitis twice and uvitis once.
After my third child I developed intercranial hypertension and I really thought I was dying! Its also called a false brain tumour as it mimics a tumour - horrendous headaches, loss of balance, hearing and papliodema (swelling) of the optic nerves. This is controlled with diruetics to reduce the amount of cerebal fluid in my body.
But last year was when it really hit me - in June I was diagnosed with a huge clot in my vena cava. I was put on warfarin and was theraputic when I got a second clot from my groin to me knee. So now I am on clexane injections which seem to be working for me.
For the last six months I have had a pressure in the left side of my abdomen / chest which is almost constant. It goes when I lie down or do exercise. I have scans, ecg, chest xrays, blood tests but no cause for this pain can be found.
I think the doctors think its anxiety (as I cant take a deep breath with this pain) but I dont think so.
I have been told by my haemotologist that I 'have probably got APS' but was told no more than.
Do you think all these things are connected and what specialist do you usually see for APS?
PS I'm 39 but feel about 79!!
Sorry I've gone on and on, didnt realise till I wrote it all down how long this crap has been going on