I was diagnosed 10 years ago after a blood clot in my carotid artery. While recovering I spent my time on the computer since I couldn’t do much else. I researched possible reasons why a healthy 44 yr old can have a blood clot. I discovered clotting disorders of many kinds, including APS. When I asked the neurologist to test me for these conditions, he patted my hand and told me that the internet turns people into hypochondriacs. Finally got my gp to do the tests, and found that I have APS. Long story but I’ve seen many drs in the last 10 yrs and none of them have been helpful. I was on Coumadin for 10 yrs and had daily nausea the whole time and often had nosebleeds. Also could not control my inr, which ranged from 2.0 to 6.5 no matter what I ate. The drs kept telling me I have to take Coumadin or I will die. When I insisted, my rheumatologist said that if I stopped, he would not continue to be my dr. I tried to talk to him about Heparin or Xarelta, and he said they are not approved by FDA for APS. I said neither is Coumadin and of course he became angry. Also had to fire my gp, he just kept repeating “aps does not cause those symptoms” and urging me to see a psychiatrist. All of the drs I’ve seen are control freaks who become angry if I ask questions or want to make my own decisions about my own body. So… here I am, I stopped taking Coumadin, and I don’t vomit in public any more but I am very very sick. Brain fog, memory loss, joint and muscle pain, headache, and exhaustion. I am hanging by a thread at work, and if I lose my job I will lose my health insurance and my home. At least my car is paid for so I will have somewhere to sleep. I have no doctor. I need to find another rheumatologist, and I am overwhelmed by the task. I am hoping that someone here can help me. I live in northern CA, 100 mi ne of San Francisco. Of course I would travel a long way for a dr who could help. I need a dr who knows about aps, because over the last 10 yrs I have never seen a dr who knows anything about it. The drs I’ve seen are very resistant to being informed by a mere mortal like me. Has anybody here had a good experience with a dr in Northern CA?
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