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Old 01-09-2013, 11:25 AM   #1
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APS related question-needing advice

I just posted here a few days ago. I had a positive dsDNA with low titers. I have been experiencing neurological manifestations and photosensitivity. I was reading the criterion about APS and feel that would be a very beneficial test for me to take and was wondering how to coax my neurologist to run the blood test on me? In fact I wanted to say that I have started taking a low dose of asprin and feel somewhat better and can actually type on the computer without feeling sick from looking at it. WEIRD i know. I know I should jump the gun yet and dx myself with APS. I am afraid my doctor will shrug me off when I ask him to run this test. What is the best way to present it to him?

 
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Old 01-09-2013, 11:38 AM   #2
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Re: APS related question-needing advice

Sorry to reply on my own post but I thought I would add that 5 months ago I gave birth to a baby girl at 32 weeks by c section. I heard my OB mention the vast amount of clots in my uterus and kept passing them after I had her. I know that premature labor is one sign of APS, and especially with the crazy amount of clotting i had.

 
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Old 01-09-2013, 01:53 PM   #3
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Re: APS related question-needing advice

I would think your neurologist would want to know if you have APS as well, since strokes and TIAs are related to lupus and APS, and can frequently be prevented if the APS is known. I would just say that you are concerned about that possibility and have not been tested for it yet. Tell him you want to do anything you can to prevent clots and strokes and that you just had a preterm birth. If any of your neurological symptoms are suggewtive of TIAs, it is imperative. Your rheum. could order the tests too. It would be most interesting to see the report on the placenta from your recent delivery, as the clots caused by APS will show up in the placenta and make the placenta look prematurely aged. The placenta, when it ages prematurely and the vessels clog up with clots cause the premature labor or cause the baby to stop growing normally. For future pregnancies, it is also essential to know if you have APS, which is found in about 30% of women with lupus. Congrats on your new little daughter, and please just ask for what you need. No good Dr would be offended by that.

 
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Old 01-15-2013, 04:56 AM   #4
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Re: APS related question-needing advice

Jen, APS is diagnosed by tests, not symptoms. One or more of the following tests must be positive two times; further, the 2nd round of tests must be conducted at least 12 weeks or more after the 1st round.
anti-cardiolipin
lupus anticoagulant**
or beta-2 glycoprotein 1.
** Don't be alarmed by the phrase "lupus anticoagulant". It's a weird misnomer and actually relates to APS, not to lupus per se. BTW, there's a "sticky post" (permanent info post) on APS that you should find helpful. The "stickies" are located right above the user threads.

The events that most often raise suspicion of APS are miscarriage, stillbirth, strokes and TIA's, *obstructive* blood clots, and pre-eclampsia. Meaning, your "uterine clots" may or may not be germane, but only a doctor could say.

Also, because you said that your anti-ds-DNA was in the range deemed negative, not positive, that's another reason to worry less.

BUT if you're still worried, if you have a family history of autoimmunity, ETC, you could discuss your APS concern with your OB. (I'm thinking "OB" first, because that's the dr. most familiar with your pregnancy & your C-section.)

Of course it makes sense to be familiar with APS and lupus, their symptoms, diagnostic criteria, etc. All women should be! But please don't convince yourself prematurely that you have lupus or APS, as self-diagnosis can sap people of energy better applied to the better things in life!

It's a fine line, I know, between legitimate and illegitmate worry. But you don't want your doctors to to stop listening to you or taking you seriously: you need them on your side. After you talk to one (or more) of your doctors, let us know if you want to discuss their responses. We're always here. Sending best wishes to you & to your new baby, Vee

P.S. Taking aspirin daily may affect any new labs done. So if new tests are recommended, in your shoes I'd inquire about taking aspirin BEFORE the tests, so as to get "truer" lab results.

 
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Old 01-15-2013, 08:40 AM   #5
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Re: APS related question-needing advice

Unless you have had a stroke, blood clot or eclampsia, there are no symptoms. APS can be a stand alone disease not associated with lupus, RA, scleroderma or any other of the AI diseases. Vee has some excellent advice. I DID get into trouble with eclampsia during my first pregnancy and ended up with an emergency c-section. I wish I had been diagnosed back then before my second pregnancy. Taking any medication has risks and should be on the advise of your Dr. I agree that it is a fine line between worries, but I might inquire about it if the c-section was an emergency, or if considering a second pregnancy, just to allay any fears concerning what your OB said. I do have APS, and am positive for both anticardiolipin antibodies as well as lupus anticoagulant and never had symptoms except the problem that developed when I went into labor. (Congrats on the new wee one!).

 
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