Well I have been to St T's and I have to say it was rather an anticlimax
I sat with the doctor who asked "well Lesley why did you want to come to this clinic?" I was immediately gob smacked and told her so - I told her I had hoped for answers as to how, this may effect my life now and maybe my life span - how it could be effecting my heart and lungs and of all things that has happened previously in my life - her response ...... " Well Lesley, as a rule APS only causes pregnancy problems and clots - you can't have more children (as I have gone through early menopause), she also said you are lucky your miscarriages happened in the first trimester most APS sufferers loose them later on..... (I wonder is the pain any less or more, whenever you lose a baby??) and are on warfarin so it shouldn't effect you anymore!!"
We spoke about my time in the wheelchair as a paraplegic 7+ years, and it seems that yes probably caused by APS, and although I have had PE's she maintains that my lung problems and shortness of breath and the AF mentioned above are not APS related but due to separate health issues. Apparently although I have had 2 positive APS tests where my Beta2 glycoprotein was above normal, but in her words only just - normal expected 0 - 6 and mine were 14 and 27 although I am sure my doc told me it was 60 something anyhow, back to the antibodies, apparently it is almost unheard of to have positive beta2 glycoprotien test without the other one ...ermmmm cardi something or other not being raised, yet mine is and was always normal. My fatigue is NOT APS she says, nor hair loss or brittle nails, the purple motteling of my skin is, but nothing to worry about, pins and needles in my back due to time in wheelchair not APS Eye sight problems may or may not be APS related
So...... she asked what I wanted???? what to say after what she had said to me, (which I kind of took as positive) - I asked her, what could she do for me that my lung specialist, cardiologist and hematologist are not - her answer?? NOTHING..... So she is repeating my beta2 glycoprotein, the cardi..... whatever it is, checking my live and kidneys (although to date they have been fine) checking me for lupus, my ESR and other inflammatory markers (total of 9 bottles blood taken) `- oh and point of interest, although my hematologist wants my INR to be 3 - 4 the doc at ST T's said she would be happy with 2 - 3
What can I say?
Smiles and wishes of good health to you all