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Positive for Lupus Coagulation-but doc is doubtful
by jenfrombill, Jun 18, 2008 12:23PM
Hi,
Sorry this long but I do not know what to do.My dad had a stroke and he tested postive for Lupus Anticoagulation- he is now on a blood thinner and they believe this caused his stroke. so when I went to my OBGYN, I am on the pill, she asked about new family history and I told her. She had me tested immediately and it is positive. My primary is annoyed. He didn't want to test further. He said she opened a can of worms and it is probably a false positive. But I have been seeing him for severe headaches- I was diagnosed with cluster headaches but the meds do not work. I have seen him for back pain, neck pain, paralysis (we think this was caused by high potassium at one point 6.5- which he did nothing about becuse he assumed it was a mistake and then for several months I still tested between 5.6-6.0). I have alo seen him for problems focusing, concentrating, extreme fatgiue. I also have problems at night where my knees or elbows get really painful and it hurts to straighten them or move. Sometimes I need to put blankets between my knees, it is awful pain. I also had a few periods where my lower back was in extreme pain for months, I couldn't walk on my feet in the morning withouth being in severe pain for the first hour or so. Sometimes I notice more clumps of hair falling out when I brush it, more than usual. I call it shedding. I also had seen him for dizziness and my heart felt like it was beating out of my chest- he did and EKG at that point because he was concerned my potassium, which he did nothing about may have effected my heart. My arms, legs and feet sometimes tingle or get weak or like right now, my foot is numb. I walk on it and I feel like I have something stuck to it because the middle to heal can feel the coldness of the floor but the front part can't. I went to the ER the other night because I was in so much pain from my headache and my pulse was 104 and my blood pressue was 156/96 (2 weeks ago it was 122/79) but I ended up leaving after waiting for hours, only to find out the nurse thought she had done blood tests on me and when she realized she didn't she said it was at least another 2 hours before I could see a doc because they would wait for blood tests. The EKG was normal but I had pain in my chest shooting to my back. But my head is awful! I have had a CTA- I have a slight bulge in my circle of willis, but they say it is no concern. Anyone ever experience this? My doctor told me yesterday after he finally decided to order more blood work to sort out this Lupus Positive test that I seemed edgy with all this. He seemed very confused as to why I was annoyed that it took him over a week to order more blood work.. I am on the pill!!! He asked me if I ever had a clot before, I said No, not yet.... Does he want to wait until I do to deicde if further testing is required? Am I going crazy? I can't take the headaches. everyone is sick of me saying I am tired, my head hurts, my back hurts, my foot is tingling or my hip hurts. I asked him for something for the headache pain, he said no, he doesn't know what the ER gave me- which was nothing. He then told me to call my neurologist about the headache pain, but said she might not do anything until the blood work comes back regarding the Lupus test. She says to just keep taking the meds she gave me, it doesn't sound like a cluster headache though cause those are seasonal. Any help or suggestion I will appreciate!
Sorry this long but I do not know what to do.My dad had a stroke and he tested postive for Lupus Anticoagulation- he is now on a blood thinner and they believe this caused his stroke. so when I went to my OBGYN, I am on the pill, she asked about new family history and I told her. She had me tested immediately and it is positive. My primary is annoyed. He didn't want to test further. He said she opened a can of worms and it is probably a false positive. But I have been seeing him for severe headaches- I was diagnosed with cluster headaches but the meds do not work. I have seen him for back pain, neck pain, paralysis (we think this was caused by high potassium at one point 6.5- which he did nothing about becuse he assumed it was a mistake and then for several months I still tested between 5.6-6.0). I have alo seen him for problems focusing, concentrating, extreme fatgiue. I also have problems at night where my knees or elbows get really painful and it hurts to straighten them or move. Sometimes I need to put blankets between my knees, it is awful pain. I also had a few periods where my lower back was in extreme pain for months, I couldn't walk on my feet in the morning withouth being in severe pain for the first hour or so. Sometimes I notice more clumps of hair falling out when I brush it, more than usual. I call it shedding. I also had seen him for dizziness and my heart felt like it was beating out of my chest- he did and EKG at that point because he was concerned my potassium, which he did nothing about may have effected my heart. My arms, legs and feet sometimes tingle or get weak or like right now, my foot is numb. I walk on it and I feel like I have something stuck to it because the middle to heal can feel the coldness of the floor but the front part can't. I went to the ER the other night because I was in so much pain from my headache and my pulse was 104 and my blood pressue was 156/96 (2 weeks ago it was 122/79) but I ended up leaving after waiting for hours, only to find out the nurse thought she had done blood tests on me and when she realized she didn't she said it was at least another 2 hours before I could see a doc because they would wait for blood tests. The EKG was normal but I had pain in my chest shooting to my back. But my head is awful! I have had a CTA- I have a slight bulge in my circle of willis, but they say it is no concern. Anyone ever experience this? My doctor told me yesterday after he finally decided to order more blood work to sort out this Lupus Positive test that I seemed edgy with all this. He seemed very confused as to why I was annoyed that it took him over a week to order more blood work.. I am on the pill!!! He asked me if I ever had a clot before, I said No, not yet.... Does he want to wait until I do to deicde if further testing is required? Am I going crazy? I can't take the headaches. everyone is sick of me saying I am tired, my head hurts, my back hurts, my foot is tingling or my hip hurts. I asked him for something for the headache pain, he said no, he doesn't know what the ER gave me- which was nothing. He then told me to call my neurologist about the headache pain, but said she might not do anything until the blood work comes back regarding the Lupus test. She says to just keep taking the meds she gave me, it doesn't sound like a cluster headache though cause those are seasonal. Any help or suggestion I will appreciate!
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i was just diagnosed with the lupus anticoagulation. i've been going a little crazy myself for many years. i've always had period issues. i've had some where i thought i was bleeding to death. i had to have my left ovary and uterus removed then to have a blood clot form in my stomach. it was the most painful thing i've ever had happen to me in my life. i had my appendix out last april and afterwards i could not remember words. the doctor sent me for a ct scan something showed up then an mri. they found i had an infarct in my basal ganglia. i went to my first hematologist last nov. who did basically nothing. now i'm on my second and this is what he discovered. i have had incredible chest pain for a while. i'm hoping to get some help quick because these pains are out of control.