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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
Comment from: Wendy, 65-74 Female (Patient) Published: January 07

Went to the doctor with toes turning black and extreme pain in them. While in hospital they found two clots in my lungs also a clot in my arm which is in a vein so not a big worry apparently. They did blood tests on two occasions and it proved I had APS. It is now 6 months later and my fingers are on fire the pain is unbearable and no one knows how to treat it except to keep my INR between 3@4 which I do.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

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.

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.


Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.


STAY INFORMED

Get the Latest health and medical information delivered direct to your inbox!