antiphospholipids?

[quackers]

Does anyone know what Antiphospholipid Syndrome is? I know it has something to do with blood clots or blood not clotting...something like that. I've tried to research it on the internet plus a few other health sites (this one too) and can't find anything to speak of really. Just a couple of Doctors studies that meant absolutely nothing to me. I couldn't pronounce half the words in it nor did I know what they meant or did I intend to spend the whole night thru the medical dicitionary (after I go out and buy one!) looking up medical terminology. Sooo...if anyone has any info on this disease or syndrome or whatever it is, it would be much appreciated. Ohh..BTW, I tested positive for it but havn't gotten in to see the Rheumatologist yet (he diagnosed it during routine testing for Fibromyagia).

[zuzu8]

Hi- This is the little I know.
You're right, it's a condition where there is a tendency toward excessive blood clotting .(blood may clot too easily).
It's a disorder of the immune system, of unknown cause.
Often associated in women who have had abnormal pregnancies or miscarriages.
Treatment is very specific to the individual, and is usually a medication that thins the blood. (Aspirin, Heparin, Coumadin among others)
Diagnosed properly and treated properly, it is compatible with a normal, healthy life!
When taking the blood thinners though, my understanding is that there are certain foods you should stay away from, and your doctor will most certainly tell you which they are.
By the way, is your diagnosis final? Because, when they do all those blood tests, sometimes the results show antibodies for this (i.e. test positive) but it doesn't actually mean you HAVE it. Your rheumatologist will be better able to explain more I'm sure. Keep us posted. I hope I simplified it a bit for you!

[lilihob]

hi!
i too have APA/APS, (the abbrieviations for this syndrome.
do not get disheartened! this is amazingly common in women, and for a lot of us has no effect on our daily life. yes, you may have to take blood-thinners, but you may be lucky, like me, and only have to be medicated for specific situations; pregancy or a surgery.
medically, the previous poster described it perfectly, so try not to worry, nothing is definite until you see the specialist, and it is not so bad.

[quackers]

Hi zuzu, thanks for your explanation and was pretty much what I thought. I seen the Rheumatologist yesterday and he said that I MAY have a false positive reading and w/o doing anymore testing wanted to put me on either aspirin or coumadin. Welll...I can't take aspirin or asa containing products because it gives me nose bleeds that require a visit to the ER to get them to stop. I told the DR that unless he could give me a definate answer on whether I had it or not, I was not going to take the medication. At one point I was on 13 different meds. 7 scheduled and 6 PRN. However after becoming thoroughly disgusted with all the doctors I stopped all my meds and solved my memory problems on my own. I truly believe now that I was just over medicated! What led to the APA/APS diagnoses was short term memory problems and the Neurologist thought that I may have Rheumatism (due to high RA lab values) so he sent me to the Rheumatologist who then said I don't have RA but do have Fibro and this 'false positive' lab result. He also said something about 'lupus anticoagulant'. But by that time he had me so upset about wanting to stick me on meds for something I may or may not have that I don't remember what he said about it. And when I told him I couldn't take asa he then wanted to send me to a blood specialist to find out why asa causes this prob for me. I told him "No, I'm not going to see another specialist, they'll just find something else wrong with me and send me to yet ANOTHER specialist and want me to take MORE medicine". He then wanted me to come back in 3 months for a re-evaluation and I told him 'no' on that also. I told him unless he could prove to me beyond resonable doubt that I had this syndrome then then there was no need to be seen for it. I figured that right there was his opportunity to re-test me for it, but he never brought it up so I didn't either.

Do you think I should take the med w/o a positive diagnoses? Should I go ahead and go see the blood specialist? I work in the medical profession (PT) so I know how important this is, but I just can't seem to make myself go see yet another doctor or take another pill. Since I stopped taking all my meds (5 weeks ago), I have never felt better in my life! Or at least in a long time anyways. And I'm so scared that they'll get me back on that medication roller coaster again. Can you believe that NONE of the doctors I've had to see (5 total, but only 3 since I stopped meds) have questioned me about why I stopped my meds? They just took it with a grain of salt and went about their duty just like I had never said a word! Soooo...any advice about what I should do would be greatly appreciated!