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
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emmaj
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Hi Emma, Im pleased for you. I think I should say that because I too think it is so important to know what it is your are dealing with. Better the enemy you know and all that.
Its not nice that we have to have these things but knowing what you have and being able to put a name to it somehow gives it the respect it needs in order for other people to also respect it to.
Like you I had a long road to dx and when it finally came it was with mixed feelings. Half of me was ecstatic to finally know what it was I had because then I could at last be taken seriously by the medical profession instead of being looked at as if I was mad. The other feeling was one of fear. Knowing that you have a condition like APS is scary but as the months have gone on that knowledge has settled down. I don't think a day goes by without me thinking about it - how can you when you are sticking a needle in your tummy every day or for others it will be constantly monitoring their INR, but as the time goes on I live for the day and try less and less to worry about tomorrow.
I am blessed with a fantastic medical team, I know they will be there if the worst were ever to happen and until then I get on with my life the best that I can.
You have a husband and children, enjoy them and live your life, just keep a healthy regard for this "thing" that lurks within us. I wish you luck and happiness. X
I'm so pleased you have answers at last, we all know the feelings you must be having right now. It is easier when you know what you aee fighting.
Getting meds right and pacing ourselves, living day by day and trying to keep positive.. Knowing that when the bad days do come you are not alone, we are here, a moan, a rant,or even to share the good news.
Well done and brilliant, it is always great to hear a person finally get some answers and as Jessie said when you know what your fighting it is a hell of a lot easier.
I am glad that some sensible and careful diagnosis has taken place, this can only improve your quality of life. Hopefully the correct medicine for you will be kept in line at the right levels... and of course this site is a constant source of support and information. All the best to you. Mary F
Hi Emma, excellent it must feel grand a step in the right direction!!!! i too have just had TIA's last week 3 in 10 days! i know how frustrating it is my CT was NAD but was in 1990 when i nearly died of blood clots on the brain!! still despite having my case study printed one doctor still implied it was anxiety despite weak left hand!!
im having mri mr venogram and now take aspirin with warfarin!!
will be around a bit more on the site as off sick not sure how long for but am feeling better today sending you love & hugs kathy xx
It took 17 years to get DX the great Man Dr Hughes sad to another Doctor yes she is 1 of hours lol I remember being delighted after many years of being told it's all in the mind and family thinking I was acting after a few weeks on cloud 9 then it hit me OMG I got very scared it is now 13 years since being DX and 28 years of ill health It's been a very long hard road but I am still alive and kicking and have no Intention of giving up xx
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sending you love & hugs kathy xx
A good day -- actually a good week/ month
aps postive at last.
Does Anti-phosphatidylserine = APS diagnosis?
How many of us have been bouncing around between specialists to get a firm diagnosis?
A new recommended INR?
