Anyone have experience with Antiphospholipid syndrome (APS)?

Posted by skymya @skymya, Feb 19, 2018

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

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beesmom | @beesmom | Jan 26, 2023

I was diagnosed with APS/Hughes syndrome 33 years ago when I tested false positive for syphillis with my first pregnancy. It has always frustrated me not knowing what might have caused this autoimmune disorder. My mother took DES while pregnant with me and was wondering whether that may have caused it. Anyone else with APS have a Mom who also took this drug during pregnancy?

beesmom | @beesmom | Jan 26, 2023

After having bloodwork done recently, I tested negative for the first time in 33 years for the autoimmune disorder APS. Has anyone else had this happen to them? Can an autoimmune disorder suddenly disappear after so many years? My GP had no explanation for this. I will still be taking my baby aspirin everyday just in case it mysteriously comes back again!

lclouser | @lclouser | Feb 17, 2023

Can anyone help me find a hematologist (or Anticoagulant specialist) who is treating patients currently experiencing APS and has more experience with treatment of the syndrome? We live in remote area; willing to travel to large metropolitan area for consultation. Thank you for any tips.

cornwalluk | @cornwalluk | Mar 10, 2023

In reply to @brendamorales1 "Hello, is anyone caring for APS syndrome? For young teenagers?" + (show)

Yes, I can see this post is 2021, so I hope you are still on here, my 14 year daughter has just be diagnosed - see really wants to connect with other teenagers with this - please contact me.

lbj372 | @lbj372 | Jun 4, 2023

Have u or do you know anyone who has suffered a catastrophic event w APS? aka "CATASTROPHIC ANTIPHOSPHOLIPID SYNDROME"

Colleen Young, Connect Director | @colleenyoung | Jun 4, 2023

In reply to @lbj372 "Have u or do you know anyone who has suffered a catastrophic event w APS? aka..." + (show)

Welcome, @lbj372. I'm tagging other APS members like @skymya @georgiagirlrelocated @beesmom @lclouser @cornwalluk @paktoledo @nicholas94. You can also see this related discussion:
- What can I expect with Antiphospholipid Syndrome (APS)? https://connect.mayoclinic.org/discussion/aps/

@lbj372, what catastrophic event did you experience with antiphospholipid syndrome (APS)? How are you doing now?

wig | @wig | Jun 5, 2023

Yes, I lost 70% of my hearing in both ears supposedly from APS. It caused blood clots in the small veins in my inner ears. The clots starved the receptors. Has anyone else had a similar catastrophic event?

kristen67 | @kristen67 | Jun 5, 2023

In reply to @wig "Yes, I lost 70% of my hearing in both ears supposedly from APS. It caused blood..." + (show)

I had an aneurysm in my eye, but fortunately I didn't lose my eyesight. Nothing in my ears though.

kristen67 | @kristen67 | Jun 5, 2023

In reply to @kristen67 "I had an aneurysm in my eye, but fortunately I didn't lose my eyesight. Nothing in..." + (show)

Has anyone else with APS had eye problems?

wig | @wig | Jun 5, 2023

In reply to @kristen67 "Has anyone else with APS had eye problems?" + (show)

I didn't mention, but a few years before I lost my hearing, I had retinal occlusions/clots in both my eyes but they cleared within a week or so. No problem since. The doctor says this is because I'm on blood thinners.