How I was Diagnosed with FVL

When I was a teenager in the mid 80's, my knee was injured and I had to have surgery. While laying in bed recovering at home a couple of days after the surgery, I began to have a horrible pain in the upper part of my calf. It felt like the worse leg cramp I'd ever had. And being an athlete and playing in cold weather, I'd had some horrible cramps. But none of those compared to the one I was having after that surgery.

After suffering horribly for a day or two, I returned to the surgeon and they diagnosed it as cramps from being in the cast and having to remain immobile for such a long period of time. He sent me home, told me to man-up, and it would get better.

The cramping eventually went away several days later, but throughout the rest of the 80's and 90's I would get recurring leg cramps that were so bad I couldn't get out of bed. I remember taking an road trip for vacation and I spent the entire week in bed because I couldn't walk, while the rest of the family went to Sea World and had a great time.

Visits to the doctor always had the same diagnosis- either a Charlie horse or a torn muscle. Though I do remember a nurse once telling the doctor my symptoms sounded like blood clot symptoms. I'll never forget the condescending look on his face as he replied to her, "Twenty-two year old men don't get blood clots".

Fast forward to late 2000 when I was 32 years old. I woke up one Friday morning with a headache so bad we rushed to the emergency room. After a weekend of being diagnosed from sinus infections to bad vision to migraines, on Monday morning I woke up and couldn't move the entire left side of my body. That was diagnosed as a reaction to all the medication they'd given me and I was told to see if it went away.

Later that evening, during the first Bush-Gore debate, I had a grande mal seizure and woke up in the hospital. It was then I was diagnosed with a Cerebral Vascular Accident (CVA), more commonly referred to as a stroke. A blood clot had apparently hit my brain. I thought it was because I realized Bush might actually win the election. But anyway, I was immediately put on Warfarin and anti-epileptic medications to prevent more seizures.

During the course of treatment for the stroke I had to undergo several invasive operations, and each time I was taken off my Coumadin so I wouldn't bleed to death. And each time I would land in the hospital for another five days with a blood clot.

After nearly a year and a half of a comedy of errors, a hematologist visited me and diagnosed it as Factor V Leiden. Two weeks later when my blood test came back, it was confirmed.

Knowing what I know now, and looking back, that first leg cramp after my first surgery was without a doubt a clot. And so were all the other leg cramps and torn muscles that I had throughout the 80's and 90's.

Oh how I wish someone would have listened to that nurse, it would have saved our family a lot of heartache and pain.