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skymya
@skymya

Posts: 5
Joined: Feb 14, 2018

Antiphospholipid syndrome/Hughes

Posted by @skymya, Mon, Feb 19 3:23pm

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

REPLY

Hello @skymya — I did a search for APLS on Connect using the search icon (magnifying glass at the top of the screen) and found one similar discussion that you might want to read through. Here is the link to the discussion:
https://connect.mayoclinic.org/discussion/antiphospholipid-and-lyme-disease/bookmark/?ajax_hook=action&_wpnonce=d25cab4b7a

Also, I found some information on the Hughes Syndrome (antiphospholipid syndrome or APS or APLS) in the Pharmaceutical Journal: Antiphospholipid syndrome: pathophysiology, diagnosis and treatment
https://www.pharmaceutical-journal.com/learning/cpd-article/antiphospholipid-syndrome-pathophysiology-diagnosis-and-treatment/20201318.cpdarticle

I'm tagging the two members who discussed APLS to see if they have any information to share with you. @soitis4590, @lena999 can you share any information on APLS with @skymya?

John

I have Primary APS. In addition to that, I have the following…Factor V Leiden, Elevated Factor V, Activated Protein C, Mixed Hyperlipidemia, and Hyperhomocysteimia.

Hello @georgiagirlrelocated — Welcome to Connect. I'm glad you found us. I did find some treatment information on the Mayo Clinic website here:
https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/diagnosis-treatment/drc-20355836

I'm tagging other members who have talked about Antiphospholipid syndrome in other discussions in hope they will be able to share any information they have learned with you. @skymya, @soitis4590, @taogirl2, @colettehellerud, @lagata, @lisaa, and @lena999 do you have any information you can share with @georgiagirlrelocated ?

@georgiagirlrelocated are you looking for any specific information that you are able to share?

John

Thanks, John

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