Ive decided today is a good day, I have finally had confirmation from a very top consultant in heamatology,that he is 'as sure as eggs are eggs if prof hughes was sat in the room with us he would say I have aps or hughes syndrome'. This comes after many years of going round the system with too many people afraid to diagnose or even treat me and leaving me with thrombotic type episodes untreated, this is despite positive anticardiolipin antibodies in the past,but the little rips hiding at the moment!! I have had late miscarriages and at least one stroke in the optical lobe of the brain, and he also says that the episodes i have been having are down to sludgy blood not supplying the brain/eyes and that all arent always visible on mri's (im all too aware of that considering i had an mri two years ago after losing some sight in both eyes and everyone was convinced that i had nothing wrong with me until a top specialist looked at the scan and saw it a year and a half later!!)
I still await the results of a lmber puncture I had done as apparently not only does aps mimic MS, but MS sufferers also can have anti cardiolipin antibodies pop up rarely too - never knew that?? So finally i have my acknowledgment I wanted and needed. He says the antibodies seem to target the small vessels of the brain which arent always seen on scans but this is the reson we suffer with memory loss/tiredness etc etc. Ive had the tell talesigns of livido reticularis, colds that last forever and really knock me down, and now i have the explenation.
I am scared of the future, and what it holds for me,husband and children, but we can all fight what we can face, its a scarier place when you know there is something wrong but nobody knows what it is or dont believe you, and after a long fight for the answers i feel like i got there today, and this is a brighter place - love to all and hope your tomorrows or next hospital visits are brighter too xxx