I have been diagnosed with APS, I have the lupus anticoagulant, antiphospholipid antibody, the byta G thing(lol), high protien S & C, as well ashomosiesten levels. In addition I had two holes in my heart a PFO &ASD that were facilitating multiple strokes. Is it common to have the wholes in the heart and APS. It took yrs to get diagnosed even though I was having multiple TIA'S an CVA's. By time I was diagnosed I was disabled from all the strokes. I have neurological issues, very little short term memory, bakance issues, can't walk long distances. I have extreme difficulty learning anything new, I have days that I can't even think, I have visual problems and hearing issues all from strokes. Am I an unusual APS patient or do we all have these problems. I have had the holes in my heart surgically closed but still have strokes an times when my leg just stops holing me an I fall. I take 11/12 mgs warfarin and 75 plavix daily. Current inr 2.1 needs to be about a 3. Still having small strokes where I loose ability to use one side of my body but I get the use back in less than 30 minutes but will have weakness and other issues from the strokes for about a week but last stroke was 9-1 and I still can't get myself together. Is all of this normal for APS patient's? Sorry my questions are so long winded. Just wondering because I feel like a freak, am I a normal APS patient?
APS with a PFO &/or ADS of the heart. - Hughes Syndrome A...
APS with a PFO &/or ADS of the heart.
Hi Soul-Rebel-APS,
Welcome to our friendly site,
I totally agree with APsnotFab´s words to you.
I have all the three antibodies in high titres since 2002 and I am on Warfarin and feel best on an INR over 3.5. It has to be stable also as our INR tends to go up and down all the time without any reason at all. CONSISTENCY what we eat is important.
A Specialist of APS is a must!
I suggest you buy "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the symptoms and how it is to live with this rare illness. Many members here already have her book. There is also a second one but the first one is the best in my opinion. She also had heartproblems.
Please stay with us. We have several members who have knowledge of heart-issues. I have leaking tricuspid- and mitralvalves and pulmonary hypertension but I feel ok.
The amount of warfarin is individual and is not so important as the INR which must be kept in range.
Best wishes from Kerstin in Stockholm
I would like to thank both Lure 2 and APSnot Fab fir their responsesn I have felt pretty alone through all of this. I am 45 but have more in comin witg lady's twice my age as we experience a lot of the same/like problems. Have a great one!
I would like to thank both Lure 2 and APSnot Fab fir their responsesn I have felt pretty alone through all of this. I am 45 but have more in comin witg lady's twice my age as we experience a lot of the same/like problems. Have a great one!
You have been given some great advice by my colleague above, it is crucial that you have a Hughes Syndrome/APS specialist who understands this disease in detail, let us know where you are located, as this will help us and other members come up with some ideas for you. MaryF
I live in Roswell New Mexico, USA.
You have come to the right place to get answers to your questions. I have APS and an ADS which I am waiting for an operation for. It took time to recognise my APS and following advice from this site I have now been referred to an APS specialist. My doctor has been brilliant but he is not an expert hence the referral. Please follow the advice on here it is the best.
Terrim
When I had my two holes n my heart fixed, PFO & ASD I found a pediatric surgeon who went thru a vein/artery in my upper thigh all the way to the heat where he installed a titanium umbrella. He was fantastic. That's to way to go do not do it thru open heart surgery its to risky for APS patient's and recovery is hell. I was up an walking feelibg pretty good the next day. Mad a significant difference in the number of strokes was having & he only took me off blood thinners for 3 days!
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