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Old 07-21-2015, 09:34 PM
heb1212 heb1212 is offline
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Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
heb1212 heb1212 is offline
Member
 
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
10 yr Member
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Quote:
Originally Posted by DejaVu View Post
Hi En Bloc,

You are sharing lots of good info.

I just want to mention the fact that not all Hematologists/Rheumatolgists (or other specialists in APS) adhere strictly to these "generalized" guidelines of when to retest, when to officially diagnose APS, when to treat for APS, etc.

Some do not require a "thrombotic" event prior to treating the patient, depending upon the patient's full picture of symptoms/signs/labs/history, etc.

There are many nuances, many extenuating circumstances, as well as varying opinions on the part of APS Specialists.

With APS (and other abnormal clotting disorders), it's critical the patient be fully assessed by an experienced specialist.

I hope this helps!

Warmly,
DejaVu
DejaVu and others... thanks for this information. I've been a member of this site for a few years now and have told my story in bits and pieces throughout that time. This thread is of particular interest to me and quite opportune. This past April, I tested mildly positive for anticardiolopin antibodies but five times normal for the beta 2 glycoprotein antibodies (antibodies associated with antiphospholipid syndrome). The test was repeated last week, three months after the initial test per the guidelines, and I'm still significantly positive for the beta 2. It leaves me with meeting the laboratory diagnostic criteria but not the clinical criteria, which requires a thrombotic event. Hmm.. waiting for a stroke or pulmonary embolism. I've had body-wide burning neuropathy for four years, which the doctors tell me is a central nervous system "sensitization" likely caused by the severe viral infection I had. So far, there hasn't been a decision to treat with anticoagulant therapy given the lack of a clinical event. My rheumatologist said the antibodies can be as a result of a chronic viral infection and not a genuine case of aPL. I'm an enigma. Thanks again!
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"Thanks for this!" says:
hopeful (07-21-2015)