LindaJoy Posted March 14, 2012 Report Share Posted March 14, 2012 Hi, everyone. I just got some lab results yesterday wherein the pathologist said I have anti-phospholipid syndrome, due to my 2 Beta Glycoprotein IgM being elevated for the second time in so many years. My vasculitis doctor said no, the numbers weren't high enough, so being the aggressive person I am, I called the APS Foundation of America, and she said that the level of the antibody doesn't matter. What matters is I show I have it, thus I have APS. Great. Just one more thing to deal with.But, anyway, I came here because, with this syndrome, you can get blue feet, like a lot of you do, and livedo reticularis, like a lot of you do, too, and other symptoms that I've read here in these forums, so I'm wondering how many of you have this? I read, Julie (Mack's Mom) that you were being tested for it last year, but I couldn't find the thread that showed your results. I'm sorry, but do you have it? If so, what is your treatment for it? How are you doing with it?Could those of you who have this tell me what other symptoms you have with it, like the livedo, etc? I'm trying to see how many of my symptoms over the years can be attributed to this autoimmune disorder.Thanks, everyone. It's a good day when my account works and I can talk with all of you.Lindajoy Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 14, 2012 Report Share Posted March 14, 2012 This is interesting to me because I have severe livedo reticularis and looked heavily for this, as well as Sneddons Syndrome (which would explain the cognitive problems). I tested negative for those antibodies though. Is the Beta 2 Glycoprotein part of Anticardiolipin antibodies? What will you do since the Dr. thinks it isn't APS - find someone else? I don't trust them either and don't blame you for doing your own research. Hope this will lead to some help. Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted March 15, 2012 Author Report Share Posted March 15, 2012 Hi, Naomi. I'm not sure about the Anticardiolipin antibodies part. All I know is, it's an antibody for APS. I'm sorry. It's all a bit much to try to become an expert on overnight. I sent an email to the CCF APS specialist, Dr. McCrea. I was advised to do this by the head of the APS foundation, whom I spoke with last night. She urged me to get a second opinion. Dr. McCrea wrote me back and said he didn't think APS was causing most of my problems since my antibody lode was low and I'd never experienced an unprovoked blood clot. I've yet to run these findings by the head of the foundation, who said I did have it, based on history and testing, and urged me to contact him. I'm anxious to get her thoughts now.Ugh. Back to probable M.E. causing my problems, and that's not a comforting thought. Thanks for writing.Linda Quote Link to comment Share on other sites More sharing options...
Trach Posted March 19, 2012 Report Share Posted March 19, 2012 After I had a stillbirth during my first pregnancy at 20 weeks, I tested positive for antiphospholipid syndrome. I do no recall the number range. My body had produced blood clots and cut off the baby's blood supply in the umbilical cord.During my subsequent pregnancies, I was tested several times and never tested positive again. My doctors believed my original test was a false positive test. I took a baby aspirin a day and was closely monitored by a high risk doctor and had two successful pregnancies. Because the antiphospholipid test can vary so widely, my doctor at the time, Dr. Valerie Parisi and later her partner insisted on sending my blood work to the doctor who developed the test. I do not remember his name but his lab was located in Utah. Dr. Parisi said she had too many problems with inconsistencies in both false positives and the levels. Recently I have seen many doctors and when I tell them my history, the doctors frequently say that there is still a problem with consistencies with the test. So, if I were you, I would get retested just to be sure. If you are interested in finding the doctor and the lab that developed the test, I can try to find the name in some old records. I hope you find an answer soon,Trish Quote Link to comment Share on other sites More sharing options...
Trach Posted March 19, 2012 Report Share Posted March 19, 2012 I finally remembered the name of the doctor from my text above. Maybe this link may be some help. I do not think the lab is just for pregnant women - I hope it may help answer some questions. The site has a lot of information on antiphospholipid syndrome. http://medicine.utah.edu/Branchlab/Branch Perinatal LaboratoryThe Branch Perinatal Laboratory is one of the most well-known labs in the country for Lupus testing. Dr. Ware Branch is internationally well-known for his work in Antiphospholipid Syndrome, recurrent pregnancy loss, and thrombotic disorders of pregnancy. The Branch Lab offers a series of testing which include: Lupus Anticoagulant, Anticardiolipin Antibodies and Anti- β2-glycoprotein I Antibodies. Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted March 20, 2012 Author Report Share Posted March 20, 2012 Thank you for much for the information, Trish. I'll go to the site right now. This has been horrible. I tested positive both times I was tested, 6 years apart, but the doctor said my antibodies weren't high enough to count. That honestly doesn't make sense to me. Why are there ranges set to show a positive antibody if no one is going to look at the lower numbers? What do those mean then?Anyway, I'll look this over. Thank you, again. I'm glad you were able to have two beautiful children, and I'm so sorry for the loss of your first.Lindajoy Quote Link to comment Share on other sites More sharing options...
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