Antiphospholipid syndrome testing
 

Did someone this test done and how were the results?

I have them
 

Hi Barb
I have (had) these. I have anticardiolipin IgM. I have had them for at least a decade, although sometimes they have come and gone with me. I usually have them in the range of 24-60. I had to be on coagulation with my pregnancies, although I was told I did not have this as a primary syndrome because I do not have any evidence of blood clot, stroke, etc. Although lately have been having a lot of small vessel issues with this nerve problem, so I don't know.

I am actually going back to neuro and rheumatologist this week for testing of them. My PN is yet to be diagnosed. In process now.

Curious - has this come up with you >?

There are 3 blood tests typicaly used in diagnosing antiphospholipid syndrome (APS). These are: Anticardiolipin antibodies (aCL) Lupus anticoagulant (LA) Anti-beta2-glycoprotein-1 (anti-B2GP1). The first test (aCL) is the most common one drawn first.

Although tests results may come back positive, a diagnosis of APS is typically NOT given unless there are two positive lab tests at least 6 months apart AND a confimred thrombotic episode (either stroke, PE, TIA, DVT, etc).

Some with positive labs but not a cotting episode may be given aspirin as a precaution, or blood thinners during pregnancy. BUt routine blood thinners are not used unless a documented clotting event has occurred.

Have you had a positive test or blood clot?

This caught my eye right away...
Yes, I have high positive for beta 2 glycoprotein and just a slightly elevated anti-cardio. I don't know how significant they are though, because I haven't had a "clinical" event. Makes me feel like a sitting duck though.

With both labs positive, you might want to consider asking your doctor about taking a daily aspirin as a precaution. Do you have autoimmine disease of any kind?

Hey please read this thread and post your comments there... http://neurotalk.psychcentral.com/sh...46#post1179946

Thanks for your reply En Bloc... No auto-immune, yet. I have been tested several times though because of high sed, severe joint and muscle pain, and then of course what brought me here... The most awful nerve pain. My skin biopsy was normal density with "occasional" axonal swelling. I know it's just a matter of time before the labs match how I feel. Thanks for all your valuable posts. I often read them.

You should not discount autoimmune just because certain labs don't show it. Up to 40% of patients with autoimmune disease are sero-negative. YOu seem to have the tpycial symptoms of autoimmune process.

I've had on and off aCL and LA, but don't know of this third item mentioned...something I might wish to inquire about. I also have low platelets. Have had this for decades. It's been very serious twice. Recently, it's an issue again, but we are in wait and see mode.

On another site I go to sometimes,I was shocked when a young woman posted that her boyfriend with extremely low platelets was given IVIG and a medication to treat low platelets. A few days later, he had chest pain and was rushed to the hospital with blood clots in his lung.

Years ago, I was told it was unlikely I would ever need to worry about clotting.hmmm.

Anyway, several mentioned that if you have anti phospholipid antibody and are treated too aggressively for ITP this could happen! :eek:WTH?!?! My hematologist, isn't even aware that I've had this dx and continue to receive it now and then by other docs.

I will need to tell her.

I have all sorts of autoimmune "stuff." Some years have been rough. I've only had nerve pain recently.

By the way, after our grandchild was born, I caught a lot of colds etc. while visiting and my hematologist felt this caused my recent troubles. I suspect viruses and /or infections can cause havoc for folks with autoimmune issues.

Yes that is true. But did your problems with pn progressed after having a cold?
Do you remember how high was cardiolipin?