Patient Comments: Antiphospholipid Syndrome - Symptoms

What were your symptoms associated with antiphospholipid syndrome?

Comment from: sadlady, 45-54 Female (Caregiver) Published: December 19

In 2003 my husband had a stroke, first they said Bell's palsy, then brain tumor, then stroke, ok In 2003 while doing IVF (in vitro fertilization) for three years, he got a DVT (deep vein thrombosis) in his leg, which shot to his heart. I never thought about the toe issue of gout. He was moving along, healing every day, and then out of nowhere, there was a brain bleed and seizure, he was in hospital for 135 days, day by day, seizure, intubated, strapped down, not speaking; the most horrible thing you could watch the man of your dreams go through. He finally came home, not the same but he was home with us. Then not 9 months later after Rituxan, plasmapheresis, Lovenox every 12 hours, IVC (inferior vena cava) filter, there were clots everywhere, he was home. Three weeks ago he had a heart attack, just a month after his mom passed. Now I am back at square 1.

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Comment from: 55-64 Male (Patient) Published: November 20

The antiphospholipid syndrome (APS) that I've had my entire life (I'm now 57) has caused 8 blood clots, 4 in the left leg, 1 in the right leg, 1 in the brain that caused ischemic stroke, 1 that traveled through the valves of my heart causing a heart attack and the last one broke free and traveled all through my body causing a TIA (transient ischemic attack). I've had a massive cerebral hemorrhage caused by a ruptured aneurysm. I have epilepsy and hypoglycemia (low blood sugar), I have protein S deficiency. I'm a willing volunteer in any types of studies on APS. Maybe someone could find some type of link to the above.

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Comment from: sadsap54, 55-64 Female (Patient) Published: May 14

I was diagnosed with antiphospholipid syndrome in 2010.My doc noticed some wonky levels in the blood test and sent to a hematologist. I was lucky to carry three pregnancies, but had 3 miscarriages. Was just in hospital for 3 days, with this syndrome my blood is thicker and holds onto triglycerides. My current level is 691. Am on all the meds they can think of and have been following a nonfat diet for years, so hoping switching meds around will help.

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Comment from: Lindyloo, 35-44 (Patient) Published: May 09

I 44 now but was diagnosed with lupus at 19 then went on to have 5 miscarriages, no live births. Then they tested me for Antiphospholipid since them I have suffered multiple TIAs over the years, eye surgery due to bleeding caused by clots, epilepsy, migraines and I have been on warfarin that the doctors are unable to stabilize due to an unrelated platelet defect. I had a stroke 5 weeks ago. But what I'm trying to find out is there any other treatment available.

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Comment from: Sunshine, 25-34 Female (Patient) Published: March 20

Although I have not been treated for this disease it has been diagnosed in myself. When I was 17 I had my first child who was born at 27 weeks gestation, she is now 16 and very healthy. At that time the doctors could not find a reason for the preterm delivery. 7 years later I conceived again and had a miscarriage, a few months later I found out I was pregnant again, and lost that baby also. My doctor then decided to run some test. The test revealed that I had Lupus and APS. A few months later I was pregnant again, which was told I needed to contact my Dr. immediately if I became pregnant, the doctor put me on Heparin shots twice daily and I delivered a healthy baby boy at full term and also had another child two years later on the same regimen. My lupus has been in remission for a long time and I consider myself pretty healthy. Although the APS is not treated and it often worries me because I have no health insurance.

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Antiphospholipid Syndrome - Cause Question: What was the cause of your antiphospholipid syndrome?
Antiphospholipid Syndrome - Effective Treatments Question: What kinds of treatment have been effective for your antiphospholipid syndrome?
Antiphospholipid Syndrome - Tests Question: Describe the tests you've had to detect antiphospholipid antibodies and antiphospholipid syndrome.

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