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Feb 19, 2018 · Antiphospholipid syndrome/Hughes in Autoimmune Diseases

Last year on May 18 I had at least 2 heart attacks, blood clots, rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. Am having a hard time dealing with the memory loss and other issues that noone i know really understands as they have not been there. I now have an irregular heart beat, beats to fast tachycardia and APLS. It was finally confirmed this week I do have APLS. There's a good chance i have had it since at least 2000. I have had a few warning signs like livedo reticularis (were my skin looks purple and mottled all the time) had preeclampsia with oldest daughter, or placental insufficiency with youngest, preterm births (last two kids) migraines and of course blood clots( at second child birth). At this time there is no cure and only treatment is blood thinners. I would love to talk to others who have this also.
Thanks!
Amber

Feb 19, 2018 · Heart Rhythm Conditions – Welcome to the group in Heart Rhythm Conditions

Only treatment is Blood Thinners and as i have had different clots in different parts of my body it will be for life now. :/

Feb 16, 2018 · Heart Rhythm Conditions – Welcome to the group in Heart Rhythm Conditions

Sure.. Its usually only diagnosed after an issue has happened such as a blood clot. They do a blood draw and check for 3 different things, anticardiolipin, beta-2 glycoprotein I (β2GPI), and lupus anticoagulant. I came back neg on the lupus but have both of the others. Then a 12 weeks wait or so and repeat the test again because some blood thinners and heart attack meds can give a false positive after a major event such as I unfortunately had. Yesterday was my second positive test results.
I also cant follow my own INR at home due to error reading caused by the APLS proteins.

If I had followed up with a doctor after i had blood clots 3 days after giving birth 17 years ago with preeclampsia, both warning signs of APLS, I might have been diagnosed earlier.

Feb 16, 2018 · Heart Rhythm Conditions – Welcome to the group in Heart Rhythm Conditions

It was postponed due to the doctor not being available.
It was confirmed yesterday that i do have primary APLS and that I dont have lupus.
I also have bilateral footdrop that is finally almost gone after months of PT and have been walking unaided for 3 months now with just a few issues with balance.
I have been having a bit of side pain. So am afraid my kidneys might be having issues again and don't wish to go back on dialysis again if i can avoid it. My last dialysis catheter developed multi clots in my jugular. :/
Its been a lot this last year that's for sure but am doing great.

Feb 14, 2018 · Heart Rhythm Conditions – Welcome to the group in Heart Rhythm Conditions

Hi!
Am 39 years of age. Last year on May 18 I had at least 2 heart attacks, blood clots, complete rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. I now have a irregular heart beat,heart damage, beats to fast tachycardia and my blood doctor thinks i have APLS a blood clot autoimmune disorder also so blood thinners for the rest of my life.. I was supposed to have a EPS ablation tomorrow with the option for a defibrillator but the doc office called now its next month. I had chest pain off and on for a few years but just blew it off as stress/panic attacks. My mother had Afib for a number of years and two ablation later is Afib free now. Happy to start talking to others and learning their stories.
Amber