Microvascular disease

I have aps and wonder if anyone links microvascular disease to APS. I had bilateral pulmonary emboli years ago, also Tia's although it was never documented by ER dr. Since then I have had numerous times of chest pain/ and times of stabbing shoulder pain. Since hospital only does ct scan of lungs when ever I have gone, it is clear that there isn't a pe. I get pain meds and go home. So we all know clots happen elsewhere (drs don't seem to acknowledge any source of possible problem) Of course I don't have any good insur- medicare, and state. Has anyone else come across this?I'm not sure if micro clots can be detected. Any thoughts? I know when my inr is too low as I get terrible headaches. (I have worked in med field 10 years - on disability do to back inj. I have a medical background and I am appalled by lack of information from docs/ and rns regarding APS.

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  • Sorry no one has responded before it seems this post was missed! Anyway micro clots are part of APS and they are difficult if at all possible to be detected. Sometimes a nuclear scan can be useful if a CT shows nothing.

    You don't say what Anticoagulation you are on but it sounds as if your warfarin is too low or if you are not on warfarin then whatever you are on needs adjusting.

    You obviously need to find a APS specialist that is close enough to you to give you advice or that you could travel to and give you info to take back to your primary care Doctor if they will accept it. Why not post a question on here asking for people's help with this giving your rough location and hopefully someone will pop up and recommend a Doctor you can go to.

    Please let us know how things are going. X

  • thanks for response, I am on coumadin and have had to change drs. New dr really barely acknowledges any medical issue. He will do bare minimun and nothing more because I am on Medicare- (back inj disability and am single mom to daughter with Down syndrome). I live in il, US. Big prob is having state ins and Medicare. I cannot get tests because as my dr put it " they are really expensive". So, I end up monitoring my levels a lot because they just have me check levels monthly. I am educated in medical area, nursing only though. It's frustrating because of lack of care from drs due to lack of ability to good insur. So I am mostly on my own here. The Specialist in my area won't see pts without health insur/ they will not take on any Medicaid pts.

  • That's terrible and I'm truly sorry. Could you start to self test? At least that way you can keep a close eye on your level and adjust when necessary yourself? Many people are doing that now and although the initial outlay for the machine may be quite a lot in the end it may be cheaper for you given your situation.

    Also Prof Hughes suggests that the INR be around 3 - 3.5 so if you are below that you may find that increasing it may improve symptoms. Discuss this at your next monthly check and see if its a possibility. At the end of the day you need to get your INR high enough to control your symptoms.

    It's going to cost Medicare a lot more if you have a stroke so making sure you are on the correct INR and other medications seems to me to be a more sensible option. X

  • Hi, I am guessing you are in USA, and I will send you this link just in case it is of use to you: apsaction.org/ Mary F x

  • I want to ask for your help, It's about my sister whose condition progressively worse. Doctors suspect on pulmonary fibroma as the result of the antiphospholipid syndrome. If you are to look and give me your valued opinion. Yesterday is connected to the NIV . Please help me. Any advice is welcome. Believe Im desperate.

    As for the family no one had similar problems . I 's the end of the seventh month received thrombocytopenia . She was treated with Medrol . Before that, she had a cold . Therapy was well tolerated , and during a couple of day's back to normal platelets . She was 15 days in the hospital. After leaving the hospital saw the medrol 54 mg . which is gradually reduced to 4 mg . weekly. In addition, she saw , and 15 mg of folic acid daily .

    At the end of September began choking. Doctors did not know what it is and it was only 4.10. admitted to the hospital .

    As far as the current treatment doctors give her only medrol (corticosteroids) and heparin did not give her. Doctors do not dare to give her cytostatics. The biggest problem is that I can not figure out what it destroys the lungs. Lung CT scan was done today only showed progression of thinking that is very fast for pulmonary fibrosis and is not clear what is happening.

    Please Help .

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