Hi, my name is Christine and I was diagnosed with Antiphospholipid Syndrome 3 weeks after my 21st birthday.
It all started one morning with terrible back pain and after a day of not being able to cope anymore I went to a GP.  Without even testing my urine she concluded that it was an urine infection and gave me some medicine.  Two days later waking up that morning I had lost all feeling in both my legs and had to lift each leg out of bed just to get up.  The pain was incredible, constant pins and needles and numbness.  I carried on like this for three days.  It was the funniest thing I have every experienced.  If my legs were bent for longer than a minute, then that’s how they would stay.  On the fourth day I had to be carried around and the softest touch to my legs would case me the cry from all the pain.

Finally my mother had enough and took me back to the GP, luckily a different one than a few days ago.  I explained how it felt: It felt like my bones were rubbing against each other causing a pain I've never felt before, nothing like the growth pains you get as a child just about a million times worst.

I was then rushed to hospital with no diagnosis.  In the first couple of days, being bed ridden, I had seen dozens of doctors and undergone dozens of tests as the doctors could just not find what was the problem.  See doctors here think that Antiphopholipid Syndrome is mostly caused by blood transfusions and seeing that I had no such history of any kind they didn't even consider it.

Well, three days into my hospital 'visit' I was finally diagnosed with Antiphospholipid Syndrome and started my recovery on Heparin injected into your stomach once a day and a high dose of pain killers.

I've been living with Antiphospholipid Syndrome for four years now and it never seems to get better.  I have to go for regular INR tests, at the moment every 3rd day because my blood is too thick. 

I went for a second opinion beginning of this year (2008) and now know that I have Primary APS and have been put on Warfarin for a live long period.  I've been using Warfarin for four years already.  My doctor has also informed me that I should not consider having children any time soon if ever.

Only in later years after my diagnosis did I discover that it runs in the family, unknowingly!  Both my mother and elder sister had miscarriages and my grandmother died in hospital going for an operation, she had a 'heart attack' the night before, as she had to stop using her Warfarin to prepare for the operation.

I apologize for my story being so long, but I feel people need to read and feel everything I went through to understand.

I had to teach myself to forget that I'm 'sick' and to remember that: I can still see, hear, taste, feel, love, be happy and have fun.  All I have to do is stay medicated and have a good healthy diet.

To all you who have it and to those you will still discover it: Good luck.  My doctor says I'm one of the lucky ones, for being diagnosed so soon and that it was not fatal.

O ye, Thanks for the great site. For four years I've been reaching for a site that gave as much info as you do.

Christine van Loggerenberg