APS, kleverig bloed en migraine

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    sept 2008; uit het weblog van Ellen S

    A recent study published in the journal Neurology is getting a lot of media attention, but a personal experience made me wonder whether researchers and the media might have missed an important connection.

    The study attempted to link migraine disease to an increased risk for thromboembolism (blood clot in a vessel) and atherosclerosis. A clear link to thromboembolism was found, but not to atherosclerosis. In fact, migraineurs in the study showed a reduced incidence of atherosclerosis, and their veins were healthier than those of non-migraineurs.

    In looking specifically at atherosclerosis for their link, did researchers miss out on another possible connection?

    It was by accident this spring that I learned about antiphospholipid antibody syndrome (APS) while researching the autoimmune disorder systemic lupus erythemetosis (SLE, or simply lupus), a personal challenge for me. (See the story here.) I had planned to introduce APS to you in next month’s newsletter, but when this study came out, I thought it would be interesting to explore the similarities.

    Also called Hughes Disease or “sticky blood,” APS was first described in 1983. APS is an autoimmune disease in which the body’s immune system begins to attack its own cells. In this case, APS affects the blood. Although recognized as a major blood disorder and an important cause of neurologic and cardiovascular problems, APS remains largely undiagnosed, even after a life-changing event such as stroke, heart attack or miscarriage. APS/Hughes Disease is rarely in the news.

    Although APS can adversely affect all body systems, migraine is often one of the first symptoms. Other symptoms which may or may not be present include TIA’s (transient ischemic attacks, or mini-strokes) and stroke, blood clots and/or deep vein thrombosis, heart valve problems and heart attack, recurrent miscarriage or pre-term deliveries and/or eclampsia, decreased platelet levels, or a blotchy or lacey appearing rash. APS can range from quite minor to deadly.

    While researchers were unable to find a direct link between migraine and atherosclerosis in this much publicized study, it left me wondering why the proven link between APS, migraine, stroke and cardiovascular complications has been neither mentioned nor publicized. I understand this was a targeted study- the researchers were looking only at atherosclerosis- but that’s where it should be up to those in the migraine community to expand upon popular news hype and step forward with other alternative connections. If those of us with a voice don’t use it, migraineurs will continue to suffer.

    How strong is the link between APS and migraine?
    In their editorial comment to the Journal of Rheumatology, Eduard Letellier, MD, and Graham R.V. Hughes, MD, state that many APS patients have a history of headache and migraine often beginning in their teen years, usually with aura. The pain is often daily, severe and associated with speech disturbance. Another major feature is memory loss, which can range from difficulty finding the right words to dementia-like symptoms. In others, symptoms are virtually indistinguishable from multiple sclerosis.

    Although practically unknown, APS is one of the most common autoimmune disorders. Up to five percent of the general population has APS; about 90 percent of those are women. It’s also reported to cause 30 percent of strokes in people under age 50. (Learn more about autoimmune disorders and autoimmune antibodies in my blog here, and here and Community post.)

    Primary care physicians remain under-informed about APS, so testing is rarely considered, even in patients exhibiting its typical symptoms. While there’s no cure for APS and it can be fatal, when treated with anti-coagulation therapy such as heparin or aspirin, symptoms abate quickly. Frequent testing when patients feel a return of symptoms results in the best outcomes.

    All migraineurs should consider testing for APS, so please research the condition and talk to your neurologist or physician. APS is diagnosed with blood tests that look for specific antibodies such as anticardiolipin antibodies (IgG, IgM, and IgA) as well as a Lupus anticoagulant panel and antibodies to b2-glycoprotein I. Some patients may be alarmed if their doctors order a syphillus test, but a false positive to this test is a good indicator for the presence of Hughes Disease. Other newer tests may be available, but there is still question about their reliability.

    Not sure if you’ve been tested for APS? Ask your doctor, then get and keep paper copies of all your medical tests so you know where you stand.

    Do you have APS or know a migraneur who does? Please share your experiences on my blog. We need to play a part in raising awareness about this serious condition!

    Meer information over APS:

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