It has taken from 2nd August 2012 (stroke) until 9th May 2013 but I have now officially been labelled with APS - having had 2 postive tests etc. Not sure if I am happy about it - on the postive at least I now know why as a person in my 40's (late but still in them) with none of the normal risk factors I had a stroke, but on the negative I now have to live with it for the rest of my life - kind of like a 'mini-me' always there and always needing some consideration in everything I do, I even have a watch alarm set to 6pm so I don't forget the Warfarin.
I know I have actually had it for upwards of 20 years and as soon as I saw the list of symptoms it all clicked into place so it really should not come as any surprise but still......Life has suddenly become a round of needles, INR checks, trips to GPs, consultants, A&E - suspected DVTs, INR to low and so on all lead to trips down the hospital - to be seen by medical staff who have no idea what the condition is or what to do about it. I had one say to me that I am completely outside of their comfort zone and they don't really want to do anything at all unless they can get hold of someone who knows what to do - very comforting. When I told the GP, she admitted I was outside of her comfort zone too!!! I once told her that my INR was well below 2 and this was worrying, she didn't really understand why this was an issue, a couple days later I had frantic phone calls from her as she had spoken to my consultant who was very worried about this and wanted me to have heparin injections if it was still low, so another trip down A&E ensued....I am going to have to give her some articles to read or something.
Oh well - not depressed just thoughtful, think I will go and have a glass of wine to see if it will help INR to raise, and wait for the lung CT to check for Lupus damage!!
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Elaine77c
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Hi there, and where are you located.. as we have a list on the website of medical experts who understand the condition, and if we can get your GP to refer you to the right place, this will give her/him confidence to manage your care - an ultimately free you up a little with the best mix of medication and support. You will have great support on here, and thank you for blogging about your history. Mary F x
Been a member for a while and find it a supportive place thanks, everyone answers questions etc, but it is only now that I have officially been given the APS 'badge'! I see a Rheumatologist in the Bristol area who is really quite clued up and very responsive thank goodness so she makes up for the knowledge gap in the other healthcare professionals I come into contact with!
Elaine lives near me and she has shown an interest in meeting up with Dani and Kathy and the others in the Bristol/Bath area, so we will keep her under our wings.
Good well if that is the case, if they fine tune together the GP and the Rheumatologist, things should get better in terms of your care, and the alarm. I would rather it were this way around rather than the lack of detail and concern some members have trying to get attention for their needs! Mary F x
Congratulations and I look forward to meeting you at our next Bristol/Bath meeting, the date and venue for which I will advise soon; thank you for providing your availability dates by PM.
We can talk about Warfarin management when we meet but it is better that you are diagnosed than not.
In Bath, there is Prof McHugh at the RNHRD (The Mineral Hospital) and he is experienced in APS.
I too am late 40's and much of what you said sounded so like the thoughts I have had since being diagnosed last month. I am not depressed as such but there seems to be so much to think over This is such a good site and I have felt so much better coming here amongst folk who "get it". Hope it works for you too.
When the ambulance pulled up to the local ER after my first serious-enough-to-attract-attention stroke/ TIA, I was much better that the ER docs sent me home since " at 41 she is too young to have a stroke. You paramedics don't know what you 're doing since you allowed this woman to con you." ( what were they thinking? What could possibly have been my motivation?)
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