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Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/6/2007 6:59 PM (GMT -7)   
Hi Ginny,
 
I have been looking for someone who knows a little about anti-phospholipid syndrome. I was told I had a small amount of antiphospholipids in my blood but then a few months later they tested and there were no trace of them. Does this mean I have Antiphospholipid syndrome?

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/6/2007 7:40 PM (GMT -7)   
yes they did do further testing and found that I tested positive for Factor V (heterozygous) everything else (protein C, prothrombin, factor VIII etc) was normal. Do you know about Factor V...everytime I ask people noone ever heard of it. I can't believe it because I was on Birth control for 6 years before they found out I had factor V and some trace of antiphospholipids. I've been off the birth control for 7 months.

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/6/2007 7:41 PM (GMT -7)   
By they way, since they told me I have Factor V I am so scared of dropping dead of a DVT or pulmonary embolism....do you think this will happen to me?

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/7/2007 7:24 AM (GMT -7)   
HI, thanks so much for your help. I am actually going for a second opinion. The doctors put me on baby aspirin once a day for now but im not sure what the symptoms for deep thrombosis are..do you know?

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 4/11/2007 7:41 PM (GMT -7)   
Hey Neurogirl,
 
I just logged onto the forum and saw my name in a thread!  Sorry I didn't contact you sooner.  I've been away from the forum for a bit.
 
As far as I know, the antiphospholipid syndrome is only found in lupus or autoimmune diseases.  Another syndrome that is the same as the anti phospho syndrome is called Hughes Syndrome.  It occurs in people who don't have lupus or an autoimmune disease.  It's basically the same thing, the thickening of the blood, but in lupus, the disease creates a special protein that makes the blood thick.  In Hughes Syndrome, I'm not sure exactly what it is that causes the blood to thicken.
 
Essentially, both syndromes put a person at risk for strokes and heartattacks.  So blood thinners like Coumidin or Heparin are used mainly. But aspirin is also a method for those who have "just a little bit" of this syndrome in their veins.
 
I've attached a link for deep vein thrombosis.  I hope it helps to answer your questions about it.  You can email if you want to talk more about the antiphospholipid syndrome.  The gals on the lupus forum are familiar with it too.  Come on over any time!
 
Ginny
 
 
 
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, food allergies
Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, micronor, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/12/2007 11:48 AM (GMT -7)   
Ginny thanks for that. I hope Im not harrasing you with my questions! If I am just please let me know. Do you know if Antiphospholipids can also be seen in healthy people without autoimmune. I heard that they can come and go in people sometimes. Did you hear about this?

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 4/13/2007 8:10 PM (GMT -7)   
Hi Neurogurl,
 
Don't ever think you're bothering me with your questions okay!  That's why we're all here, to help each other! (((hgus)))
 
Hughes Syndrome is also called the antiphospholipid syndrome.  However, those with Hughes don't have lupus.  Hughes syndrome is considered its own autoimmune disease.  Those with lupus have secondary antiphospholipid syndrome.  Those without lupus have primary APS.
 
Considering that Hughes and APS are autoimmune disorders, it is unlikely that anyone would all of a sudden not have the condition.  You can go through periods of remission where the disease activity is very, very quiet, and it would appear that the condition is gone.  But in reality, it is still there, just hiding well and behaving itself!!
 
I've attached another link to a Hughes Syndrome website that I think is very good.  I hope this helps clear things up more for you!
 
Blessings,
Ginny
 
http://www.hughes-syndrome.org/overview.htm#related
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, food allergies
Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, micronor, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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