Story about Antiphospholipid / Hughes Syndrome , Epilepsy.

Unprovoked blood clots

Feb 3, 2018


In January 1992, I felt a pinching sensation behind my left knee. I had a check-up appointment with my primary care doctor in a couple weeks so my wife and I agreed to tell him then. At the doctors office I matter of factory said to him, " oh, by the way I felt a pinching sensation behind my left knee a couple weeks ago". So,I pulled up my sweatpants leg so that he could measure my left calf (affected side), it measured 17 1/2". He then measured my right calf (unaffected side), it measured 15 1/2". So. he then said that he is going to send me for a vascular scan to rule out a blood clot. A clot was found behind my left knee. Coumadin (the only Anticoagulent to treat APS) even before I was diagnosed with APS.
To make a 12 year journey short, I went on to have 7 more clots. Was put on Lovenox after 2 clots appeared. Had another clot while on Lovenox and an Ischemic stroke. After clot #8, a hematologist visited while in the hospital looked at my chart and seen that I was protein S Deficient. After being discharged upon visiting this hemotologist it was determined that I DID have the Antiphospholipid Syndrome antibody. I was immediately put on a Coumadin regiment with an INR of 2-3, (today my INR target ot 4.5). I visit the St. Agnes AntiCoAgulation clinic weekly to have my INR checked. I am the poster child for Antiphospholipid Syndrome!
LHR

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