Patient Comments: Antiphospholipid Syndrome - Symptoms

What were your symptoms associated with antiphospholipid syndrome?

Comment from: dsr0529, 55-64 Female (Patient) Published: February 29

With antiphospholipid syndrome (APS) is there a tendency for your knees and lower calves to swell and throb. I have always had a history of migraines. Iron deficiency anemia along with APS was diagnosed in 6/15. I am currently on Xarelto. I continue to have migraines. My current concern is the swollen knees, dry skin and thin nails. I am taking biotin. I see my hematologist in 1 month.

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Comment from: my granson, 25-34 Female (Patient) Published: February 03

As a baby whenever he was ill he always broke out in cold sores in his mouth and on his hands. Now since he has been at school he has been getting seizures, where he would freeze and stare for a few minutes and quite often vomit after. Now he has just spent a few days in hospital as he had a full blown seizure where the full body was shaking. He has had all the tests i.e., brain scan, lumbar punch, EEG, and they were all clear. They did say he had a sinus infection so he had antibiotics for a few days, but still can't get to the bottom of it. It is very worrying and horrible to see a child go through this, and still not knowing what the cause of it is.

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Comment from: RFK, 65-74 Male (Patient) Published: September 10

I was diagnosed with antiphospholipid syndrome (APS) 23 years ago, after coughing up blood on numerous occasions. APS led to a mitral valve replacement and firstly I had heavy dosage of Coumadin and more recently heavy dosage of heparin as I still get blood clots. Shortly after the valve replacement I started having grand and petite mal seizures and am now on 2 types of seizure medication, although the seizures still occur. I am now scheduled to have electrodes implanted in my brain to determine from which area of the brain they emanate and possibly burn out that site to end the seizures.

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Comment from: Helpless and tired, 45-54 Female (Patient) Published: April 30

Ten years ago I started having mini strokes and before that I had a total of 4 miscarriages and 1 stillbirth. I still have no answer to what was going on, but I do have 2 living children and during both of those pregnancies my platelets dropped to dangerous levels. Now after 2 years of mini strokes (transient ischemic attacks), finally I had a real stroke. It has been over 7 years with antiphospholipid syndrome, and now with extreme fatigue, weakness in muscles and occasional joint stiffness, I am having symptoms of mini strokes again, but no signs of new strokes yet, migraines continue. Wishing I could find a specialist to help!

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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: sonia, 65-74 Male (Patient) Published: November 17

My daughter was treated for thyroid problems but the doctor stopped medicine for thyroid and started her on steroids. She lost her immunity and suffered and developed acute respiratory distress (ARDS) with difficult breathing. She was admitted in hospital and she was given antibiotic but she did not recover and finally expired 25 days after admission. We spent more than 20 lakhs of rupees, but of no use. Her small children are without their mother.

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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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