I was diagnosed with APS 20+ years ago before then, and since I have suffered from pre-stroke conditions that resolve with Nitroglycerin. I have gone to every hospital too many doctors and all types to list here, but if you can think of one, I have seen them. During my last hospital stay, I asked a young Physical's Assistant for a brain scan due to my declining mental state, and she agreed that it was warranted then had it performed. The report states, "Minimal scattered hyperintense foci are present, nonspecific in a patient of this age, but possibly caused by small vessel ischemic changes. Chronic appearing white matter foci."
The doctors seem to be going out of their way to minimize even one called the scan normal. I agree the results say minimal, but that is not the same as normal, especially as my wife and I live with my decline. Now they want to which me from Warfarin to one of the new classes of blood thinners, and the hematologist said in passing that he wants to retest me for APS again. I agreed to which medicines, but something has troubled me about the whole encounter.
I am I being too paranoid?
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nubianprof63
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I hope the above article will give you insight to help you with best treatment .
Also, you might ask your neurologist ( I assume you have one well versed in APS) if he has heard of APS that involves the brain termed, “ cerebral APS”?
Ask him if he thinks your case warrants running genetic markers for Sneddons syndrome?
All these are definitely reasons to not switch to a NOAC/ DOAC.
If you are horribly labile with INR, sometimes high intensity Lovenox ( enoxaparin) is an option but must be administered as a split dose as to avoid the troughs with severe APS. ( 1 mg per kg of body weight every 12 hours) and usually clopidogrel is added with cerebral involvement in APS.
This info was told to me directly in my consultation by a top APS hematologist who ran the RAPS trial .
Best of luck to you. Please print this for your Hematologist and neurologist.
Hi there, as per your previous post, it is vital that you have a Hughes Syndrome/APS specialist, either one off the website we gave you, or one recommended by people who are near you area which I think you said was Kansas. You need to also as many of us do, check your levels of vitamin D, B12, Folate, Ferritin and a very thorough Thyroid panel, it can all add to the picture, I also enclose this paper for you to read: the-rheumatologist.org/arti...
I reread a little and saw your INR was at 3.0 - 4.0 and that you have got a selftesting machine. That sounds good. I wonder if the vein-test and the fingertest gives the same INR-numbers? Usually the fingerpricktest is a bit higher. That is important to know.
I have also Pulmonary Hypertension and have had exstremely high bloodpressure before diagnosted and started Warfarin. I have also two leaking heart-valves. Probably microclots or PEs earlier.
I do an yearly Echocardiography with doppler at the hospital and two years ago a Cardiolog suddenly looked in and asked me what INR I was at. I said "4.0" and he went away and said. "That is good". I have a Rheumatologist and a Hematologist and a Cardiolog if needed.
I know it is important to keep the INR of around 4.0. I live in Sweden and i am happy for my knowledable Specialists.
I am triplepositive incl Lupus Anticoagulant and i wonder if you also are that? I can tell you that the Specialists test my 2 antibodies twice a year. I can not take Lupus Anticoagulant-test anymore when on Warfarin, but as I have had persistantly high titres from 2002 and had several LA positive many years before Warfarin, we assume I am still LA-positive.
Get your bloodpressure down. Get a Specialist. Ask for an Ecocardiopgraphy with doppler and something if you INR droppes suddenly under your therapeutic range. I take a Fragminshot if under an INR of 3.5.
And do not let them change your Warfarin before you have talked with a Doctor of APS who knows what APS means with cerebral and heart-issues. We need our blood thinned!!!!!
I, too experienced, TIA like symptoms, prior to being diagnosed with APS, my doctor sent me for both a Ct scan, and an MRI. Neither showed anything alarming, which of course was because nothing untoward had yet occurred. But I was referred to a neurologist. I was finally diagnosed with APS in hospital by a hematologist following a significant stroke that left me in a wheelchair hemipalegic on my left side. , at the age of 47. Fortunately, I was extremely fit, and healthy before the stroke, and thanks to a heck of a lot of hard work, and determination, I no longer use a wheelchair but I still have no use of my arm and hand on my stroke affected side. My reply to your post is not to cause you undue concern but , to give you the advice my doctor never gave me. Next time you have TIA type symptoms go to the ER, but do not drive yourself! Even if the symptoms disappear. It will ultimately cost less for that trip to the E.R., than it does to recover from stroke! My reuhmatologist unhelpfully told me post stroke that the first clot(clotting episode), isn’t usually in ones head, bad luck from my point of view! I was very bitter post stroke, especially when I later learned APS, which I had never heard of prior to my own diagnosis, has a link to Lupus. Although, I don’t have active Lupus, a blood test did reveal some kind of positive reading to Lupus. I was upset to say the least, that test was six months prior to my stroke.(and thereby my association to this particular rheumatologist. Again, my intent is not to alarm you, but I don’t want what happened to me to happen to anyone else.
We have spoken before........ hope you now have a Specialist of APS who can give you the correct anticoagulation.
I had microemboli and they are very difficult to see on a Scan of any type. They travel through the body and make a lot of fuss. I know now that it is so very important to keep the Warfarin in a correct and stabil level. I need an INR around 4.0.
Hope your Neurolgist understands that we with APS are not the usual stroke-survivers, but our problem is our thick blood that must be thinned enough. So very few Doctors understand us that that is our big problem.
Sorry, I didn”t remember that we”vê message previously but stroke is a brain injury, and the short term memory takes a my brain after forming elsewhere in the hit. It has been a little over four years since my stroke and my Blood clot formed in my head, ta with APS. Knock wood, I haven’t had any other clotting episodes since then so I guess my doctors have been doing a good job managing my INR. And my CoumadiNn dose. I likewise recently survived gall bladder removal surgery without bleeding excessively during surgery, or clotting afterwards, we are still working to get my INR back to where it was.prior to stopping the Coumadin before surgery. I did bridge with Fragmin. I have notexperienced any of my previous APS symptoms either, from my understanding, my stroke blood clot formed in my head rather than travelled to my brain.
We are all different and some of us have microclots also and microemboli. As he said they can travel from the feet through the heart up to the brain some of them.
Perhaps you have positive Lupus Anticoagulant like me and then it can be difficult to get the INR at a stabel level. Hope you have a Specialist now. A Hematologist perhaps who is in charge of your Warfarin.
If you do not have any APS-symptoms any more that is good and then you understand you are correct anticoagulated.
What INR-level are they aiming for? Canada may have a lot of APS-Specialists. I have the best ones in Stockholm.
Hi there! I haven’t been on here for a long time, but my doctor is Dr. Brian Osgood at KU Med. His office is actually in Lee’s Summit, MO. I like him a lot and love my nurse, Peggy. So far though, he will not consider letting me do self testing at home. I really think I would do well with that. Saying that, my INR has been spot on for the last 4 months. I’m in warfarin and my range is 3.0 - 3.5.
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