Story about Antiphospholipid / Hughes Syndrome .

What the heck

Jul 1, 2018

By: Sue

Year Condition Began: 2017


In Sept of '17 I began experiencing aches in the joints of my left arm. I went to Urgent Care and they initially thought I strained it. They gave me a sling and said take Advil. On a trip to Seattle with my team of amazing tech educators my left hand became cold to the touch and my arm was weak.

Upon returning to PDX, I went in to urgent care again. The doctor thought it was nerve related but I pushed him until he got a doppler machine and couldn’t find a pulse in my writst. I was scheduled the next day for an ultrasound.

After the ultrasound they immediately checked me into the hospital as my left arm was horribibly clotted.

They found that I had an extra rib which caused an anuerism in my subclavian artery (thoracic outlet syndrome). I had a lot of clotting in my left arm. It had been going on long enough that my body had formed collateral arteries. While in the hospital, getting ready for surgery to remove extensive clotting in my arm and on heparin, I had a stroke. They thought I might have been alergic to Heparin (HITT). I was extremely fortunate to have great and immediate care and have recovered completely from the stroke.

Three months after my initial hospital stay my bypass clotted while on warfarin. Went back in hospital for a replacement bypass and was tested for Lupus AntiCoag. Repeated test 12 weeks later - confirmed APS

I’ve been dissappointed with the information - really lack of info - provided by my hematologist - finding out about my diagnosis in a brief email with no other info offered. I’ve been searching for more information and learning as I go.

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