Hello everyone, I have a few questions about Hughes Syndrome. I've been going over my lab results and it is all so confusing. I have tested on two separate occasions, over a year apart, to have a high level of Anti Beta 2 Glycoprotien 1 1gG Antibodies. On the first round of tests after I had my first blood clot in 2012, I tested positive 98 percent. On the test I had a few months ago, I tested 85 percent. On both of the tests I took it stated that a Lupus Anticoagulant was detected, but it is not valid if the patient is on blood thinners. Does that mean that I do not have the Lupus Anticoagulant. I am worried about having the (LA) and the high amount of Beta 2 Antibodies as that will put me at an even higher risk for clotting in the future. These antibodies have been in my system in high levels for years now. I however do not have Anticardioliphin Antibodies.
Another thing that has been troubling me is how could I have been living all of this time with such high level of the disease and no real symptoms other than some bad shortness of breath in 2009, a few years before my DVT/PE? Looking back I can recall times when I felt thing zipping and popping in my right calf all the way back to when I was a teenager (which looking back could have been possible blood clots moving through my veins) I also had a lot of stabbing pains in my lungs before, just never thought anything of it. I also have never been able to walk a lot, or run. My legs always start burning and become very fatigues after I walk more than half a mile. Yet I never had headaches, I never had Levedo Reticularis. I don't recall having any of the classic symptoms of the disease. I do have severe ringing in both ears and I have a lot of fatigue, but no TIA's. The MRI of my brain came back clean. Could it be that this disease decided to just jump out and cause havoc at a later time in my life. I was 35 when I had my DVT/PE. They were provoked by a bad leg injury.
Also, my Rheumatologist tested me for Lupus (SLE) and my bloods came back negative, so he discharged me back to my Hematologist. He claims that what I have is a blood disorder and not an autoimmune disorder and that I do not need to be treated with Plaquenil. I thought APS was supposed to be treated by a Rheumy. I am in the states, so this doctor might not know a lot about APS. He is also an older doctor. He has been practicing for 45 years. I'm very concerned about developing new blood clots while I'm on Warfarin. I had an incident last year where I had severe chest pain and they didn't find any new clots in my lungs, but they could not tell of the clots in my bad leg were chronic or new. They were not able to effectively rule out an acute clot. I have been having a lot of chest pains lately - but I have them all of the time since my PE.
I sometimes have this feeling like I'm going to die when I feel these burning pains in my lungs like a squeezing feeling, and sometimes like someone is pouring hot liquid into my lungs. My current Pulmonologist claims that the lungs do not feel pain. Despite the rise of pain in my chest, I always have a low to medium grade level dull aching pain in the left side of my chest. I also have been diagnosed with Post Thrombotic Syndrome and I have a severely damaged section of vein in my right leg - my hematologist said even without APS, if I were to come off of blood thinners with my vein being that damaged, I would clot up within 10 days. This all makes me feel like I'm doomed. I feel like there is a loaded gun to my head each and every day. I either clot to death, or I bleed out from the blood thinners. Any how, I appreciate any advice or support you guys can provide. Thanks for your time.