Patient Comments: Antiphospholipid Syndrome - Symptoms

What were your symptoms associated with antiphospholipid syndrome?

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: veronica, 35-44 Female (Caregiver) Published: August 20

My daughter has antiphospholipid syndrome and is having such a hard time with her periods. The amount of blood she loses is amazing and this goes on for weeks she has been told she has a venous infarction in her brain but no one has said it has to do with the antiphospholipid syndrome.

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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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Comment from: Annasor, 45-54 Female (Patient) Published: March 07

While I was pregnant with my son in 1985 I had allot of TIA's, mini strokes, I then had my first stroke a few months after giving birth to him. While I was in the hospital following the stroke they found more things wrong, heart valve problem they thought the reason I had the stroke was because I had thrown a clot due to false positive endocarditis. Went on for 6 years and had another stroke. It is then I was diagnosed with Lupus Anticoagulant, Antiphospholipid Syndrome. That is when they added Coumadin to my daily medicines. I am still finding out about all the things that are related to this syndrome. Please let me know what other symptoms you all have had so I can understand what might be related.

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Comment from: rpope1, 55-64 Female (Patient) Published: October 25

APS has only attacked one area of my body, my left foot. When I had a severe Bunion on this foot and all the bones from my toes stuck down I had my first attack. My foot literally felt like it was on fire. I went to the emergency room and they told me it was all in my head (even though my foot was beet red)! I went to Vein specialists who all noted I had "good veins". A blood test revealed the APS. After the burning there were black areas on my foot that looked like it had been beaten. After that, those areas blistered. Recently, I had ANOTHER attack and it showed up in the Big toe on this same foot. Right before a scheduled foot operation the toe turned purple and became greatly inflamed. It felt like a raw blister. They cancelled my foot operation and had me go to the emergency room for Doppler Ultrasounds on my arteries and veins in this leg. Again, the veins were fine. Then I saw a Hematologist who kept telling me it was the veins and after much protesting he put me on a good dose of Lovanox. Within twelve hours my purple toe turned a mild red and all the other discoloration in my foot disappeared.

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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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