Patient Comments: Antiphospholipid Syndrome - Cause


What was the cause of your antiphospholipid syndrome? Submit Your Comment

Comment from: CocoFluff, 55-64 Female (Patient) Published: April 28

I had no symptoms or realization of antiphospholipid syndrome (APS) until after I came out of a coma. I had a ruptured appendix and total organ failure. I was in a coma for 7 days. After recovery is when the TIAs (transient ischemic attacks) began, and headaches. Then I began to have vision issues, and would temporarily loose body parts (a hand, arm, leg or face would go numb). Then vision got worse with a gray screen coming down over my eyes and I would lose sight. I have had 2 or more strokes and have some permanent brain damage with memory issues now. I was placed on Plavix then had a stomach bleed and switched to Aggrenox while that was cauterized and healing. Now I am back on Plavix but still have memory issues, vision issues, and temporary body parts going numb. What I find interesting about my case is I had no knowledge of blood issues until after my appendix ruptured. I am told it was always there and probably the traumatic event from my appendix set it all in motion. One of the most difficult things to deal with is the fatigue. I want to do things but am often too fatigued.

Comment from: mozelle, 75 or over Female (Patient) Published: July 14

At age 63 I had DVT (deep vein thrombosis) in popliteal vein after fracture and in cast for 6 weeks. Doctor attributed it to immobility. Fourteen years later I developed plantar fasciitis, and orthopedist also made me see a vascular doctor. I was diagnosed with 3 DVTs at the same time in 3 gastrocnemius veins. I was treated with Lovenox and Coumadin and then diagnosed by hematologist after extensive blood tests with Factor V Leiden, and antiphospholipid syndrome (APS)/Hughes syndrome. I have a history of 40 years of migraine headaches, had miscarriage, minor heart valve problem, and a variety of other things that I think are related to this syndrome. Amazing that I was diagnosed so late in life, and that I survived what my hematologist described as 'I have been getting blood clots my whole life'. I am now on warfarin for life and under care of hematologist who specializes in APS.

Comment from: Stella, 0-2 Female (Caregiver) Published: October 08

My wife had antiphospholipid syndrome (APS) several years ago and went into a coma. A rheumatologist was called in and she was given high dose methylprednisolone for 3 days and the 4th day she was like she used to be, with a smile. This was tapered down slowly and in 2 months, down to 10 mg a day and stayed there for several years and she recovered completely. The secret is getting the correct doctor.

Comment from: alice, 55-64 Female (Patient) Published: April 14

I was diagnosed with lupus 25 years ago after I suffered a stroke and at the time I was pregnant. After 4 stillbirths all at 7 months gestation 1 live baby was born at 8 months gestation. My last pregnancy I was hospitalized at 2 months gestation and at 7 months sure enough trouble started (blood clots filling the umbilical cord). Thanks to Doppler studies they did at the hospital, decided to perform a Caesarian section at 28 weeks, and with great relief I now have 2 live children. I have also been diagnosed with antiphospholipid syndrome. I have been taking warfarin for 25 years and for life, whilst pregnant I was on daily heparin injections.

Comment from: Female (Patient) Published: June 02

I am 69 years old, almost 70. In November 2013 I had an odd spell and had numbness on my right side and lost my speech. I had a stroke and was rushed to the emergency room and subsequently admitted to the hospital and was told I had a stroke. I had no signs or symptoms prior to the stroke. Doctors ran several tests and everything returned normal with no signs of a bleed anywhere. I wore a Holter monitor in the hospital which showed very occasional irregular heartbeats. The doctor decided to run one more blood test which was the antiphospholipid (APL). It came back positive and they thought it was a false positive. I was placed on warfarin for the stroke and sent home. Over Thanksgiving I wore a 24 hour monitor while doing normal activities and was then diagnosed with atrial fibrillation. This past week I had a repeat of the APL and it proved highly positive. Prior to this stroke I had had no symptoms but generalized fatigue.

Comment from: Claudette C., 35-44 Female (Patient) Published: October 28

General physicians could not diagnose me, a physician took an MRI and blood test and found that I had antiphospholipid syndrome. I had headaches, and burning sensation in the feet and legs. My feet are black, they look burnt, and I have memory loss. I am on daily warfarin and maintaining the 3 to 4 levels. But there is no cure; I have suffered 3 strokes. But I am doing well; I know it can be depressing to not understand what is happening to your body. We can only hope that one day we will get answers.

Comment from: james55, 55-64 Male (Patient) Published: December 16

It took doctors 15 years to diagnose my APS (antiphospholipid syndrome), which they told me was caused by SLE (systemic lupus erythematosus). I don’t believe them. I have had dozens of DVTs (deep venous thrombosis) and every time I had a new clot, I got a new anti-coagulant. This has been going on for 35 years and no one has been able to tell me the cause.


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