APS and strokes

Just wondering how many of us have had it confirmed that they have suffered from small strokes and a stroke? Feedback would be great..many thanks

I wish to thank everybody who has replied to me..... I recently saw my stroke consultant and asked the question regarding TIA s evidence on scans, the answer was that they do not leave any evidence on any scan! I suffered a larger stroke in Feb 2011 the mri scans I have had since show also multiple small strokes all over my brain, sometimes although I do suffer and have suffered many tias when my INR is low I sometimes feel that when Docs talk to me they think the multiple small strokes I have suffered they automatically think that they are TIAs!. I find it also frustrating that I have been diagnosed with Sneddons also I have addressed the question to the top consultants to what it is and they state it is the same. Confusing eh???

26 Replies

  • you can read my stroke story at tbihome.org/members/peter/

    for me it was the introduction to APS

  • It was when I had a Stroke that my APS was finally diagnosed.

  • I had many tias culminating to a full blown stroke attributed to CNS vasculitis, in 1998. I was not yet diagnosed with APS. I don't think it was acknowledged as a diagnosis in 1998. Symptoms were very similar except vasculitis is nerves strangling and finally dying and APS is more about vein/artery/circulation/clot problems it seems. I emphasize "it seems" because I don't believe they know enough about either disease to completely distinguish. It may be something we simply haven't acknowleged or a stage of it not recognized yet. The cardinal rule in medicine is, "if you can't prove it, it doesn't exist." unfortunately and fortunately. I wouldn't want someone guessing. All we pay an MD for now is an, "educated opinion".

  • Had 3 strokes pre dx of sneddons/aps. had another stroke jan 2012 while on warfarin. Have had many TIAs.

  • Hi, you say you had a stroke while on warfarin; was it because your INR wasn't in the right range? Thanks!

  • Yes INR was out of range...think it was 2.1 x

  • I have had 4 strokes. one clot, lost vision in right eye & 3 bleeds from INR to high. Thank God I have no other residual effects!!!!! Have had a lot of TIA's. This is over a period of 17 years.

  • yes min stroke in May 2011 despite telling doctors I needed more than Aspirin due to mother who unfortunately lost her life, only when had stroke did I have Clopidogrel and then later warfarin. Now on Warfarin, Heparin and statin. Trying to get INRS the right level juggling act.

  • hello daisy.....your post caught my attention....my paternal grandmother died from complications of a "stroke like event"...long ago 1962....I've been dx w/APS...my Rheumatologist diagnosed via results lab test ...measured "stickiness of blood"

    (in lay terms)==#23...anything above #10 means blood is too "sticky".....she tests my blood every 3 months and so far this number remains below #10...I take 4/80mg Aspirin......you write that you told MD you needed "more than Aspirin"....at the time did he test your blood on a regular basis??? seems like a "no brainer" as they say in here in the US....

    Just wondering if the test I get will prevent a stroke by alerting my MD that my blood is becoming "too sticky"....stay well

  • I am forever saying to my Haem and reminding them that my mother died, my daughter has APS/LUPUS and we have to remind them too. Yes I was diagnosed many years ago at St Thomas in the eighties and have had stillbirth and then another baby due to clot in placenta. As said the doctor last year was debating when to put me on warfarin and it was during this time, I suffered from TIA which was a shock. I must say that since being on Warfarin tend to get funny heads I have explained to ST T. I was just on aspirin. As I left area I was routed back to St Thomas - thank goodness!!

    Take care

  • Thank you stay well

  • I had two strokes was then told i have APS/LUPUS and also Sneddon's syndrome. i am on warfarin now and my range is between 3 - 4. originally on range 2 -3.

  • I had at least 7 Tia's which showed up on MRI when my arm stopped working properly. I was then diagnosed with primary APS and am on warfarin with a range of 3.5 - 4. Have been left with cognitive disfunction.

  • Had some kind of small stroke 13yrs ago and then diagnosed with Hughes - nothing showed up on an MRI sca,apart from the white dots common to Hughes, but a cognitive test showed serious deficiencies, I am about to have another MRI and assessment as my memory and other skills suddenly deteriorated a couple of months ago.

  • SLE diagnosed 1990 following DVT & PE but Hughes wasn't diagnosed until 1993 following TIAs and stroke.

  • I don't know how many TIA's I've had, but my MRI shows the scar tissue all over my frontal lobe. I had a neuropsych exam a few months ago, and it showed that I have significant impairment.

  • 1 stroke and more tia's than could possible count..... all before dx of APS in 2008.

  • I have had a heart attack and 3 strokes since my dx of Aps in 1995, all of which were caused by blood clots. My stroke on January ,18, 2010 almost took my life and I was on life support.


  • I was diagnosed with having mini strokes i.e. TIAs after an MRI Having had two subsequent MRIs I was told that I have had further TIAs despite being on Clexane. I also have Small Vessel Disease caused by Hughes.

    I have white matter damage and lesions caused by the above.

  • 2007 I had a stroke /funny turn / blackout and next day my speech was shot and left arm weak and heavy. Now Warfarin INR 4 to 5 has got me back to the best I can be. 1998 I had similar episode(both on an airplane) lung infection, fatigue, migraine as a youth, the alarm bells were ringing but never knew, I was young, strong, ambitious and just got on with life.

    Oooh how I would do things so differently if I could rewind the film.

  • Stroke 7-2000, following eclampsia, emergency c-sect, and preg induced heart failure. I had a stroke in the ICC. It was in the occipital lobe. Affects my peripheral vision. On coumadin. I was dx in Jan of 99.

  • Hi, I had my first stroke Oct 11. Was placed on Plavix as APS diagnosis wasn't yet made. In Sep 12 I had two TIAs. Coincidentally (thank God!) was diagnosed conclusively with APS the week following the TIAs. Have been on warfarin since and try to maintain an INR of 2.5 to 3.0. Have not had any further thrombotic events.

  • I have been diagnosed with APS since 1996. I had a pulmonary embolism in 1992 and a stroke in 2011. Prior to the stroke I had some dental surgery in which my doctor told me to go off my coumadin four days prior and start back on after the day after the surgery. One week later I experienced numbness in my fingers and then I had the stroke. I currently are pursuing a law suite however some of the APS doctors don't recognize the relationship between APS, stroke and the fact that I was off Coumadin for six days.

    I'm trying to search medical journals, neurologists, etc... That have any evidence that the removal of Coumadin during my dental surgery resulted in my stroke given I having been diagnosed with APS.

  • Hi Hubbsy,

    So sorry to hear that they have treated you so very wrong. Must be difficult to get a real confirmation and have the Doctor to confess etc etc.

    What country do you live in?

    At least I hope you have a Specialist today as you have got a diagnose since several years back. Also you have got a PE and therefor I hope you stay on a high therapeutic level of an INR around 4.0 with your Coumadin.

    I am afraid that you are not alone to have a Doctor who did not know that we need constant anticoagulation and therefor never stop Coumadin just like that. 6 days!

    Good Luck with your "case" and hope you win!

    Best wishes from Kerstin in Stockholm

  • I'm from Canada

  • Hubbsy I understand your pursuit

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