does anyone else wander why are memories are still affected despite being on warfarin & in range?

Hi guys i cant help but think my short term memory, especially, has got worse - i had a series of TIA's but with no evidence on mri but opthalmology evidence of ocular tias but i cant help but wander why my memory is worse despite now maintaining an inr of above 3 the majority of the time.

Its baffling and when i mentioned my concerns to my neurologist he didnt comment i got the feeling he decided due to no stroke seen on mri i didnt have a TIA but i know how unwell i was and had weak arm and leg & visible vascular issues with my arm and leg that thank fully resolved after warfarin clexane and aspirin.

It seems a common occurence that we have these clotting incidencies that often dont leave any evidence on current scans - thats when it seems we struggle to get taken seriously unless with have a serious clot that renders us permanently compromised!

any thoughts xxx

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  • Yes I know what you mean, as even tho mine normally gets worse when inr is low it can do it when its ok to!! So annoying & embarasing at times! I know with me being stressed at the moment mines got worse....I keep going into trances too & losing track of time? I hope yours improves xx

  • There is no evidence on my MRI that I have had any TIAs but my memory is still shocking at times, poor concentration and difficulty in word finding but I was told today that apparently this is due to my age. (I'm 44!!). Brilliant!

  • TIA's & Strokes can lead to damage in the brain and this is what is probably causing our memory losses. I have had 4 strokes and my memory is pretty bad. Not long term memory but short term, so don't know what that is about, Good luck to all!!!!!!!!!!!!

  • Hi Kathy

    Same here, short term memory is dreadful, and getting worse, have for the last couple of months struggled below lower range of Inr, my poor brain really struggling. Had a couple of Tia's in last few months, clot in leg, on clexane injections for a week or so and fog was lifting, it's back with a vengeance now though!

    Oh well we'll see what's round the next corner!

    I hope you feeling ok today!

    Take care gentle hugs love Sheena xxxxx :-) :-) :-)

  • TIAs don't show on the scans but strokes do. Makes it hard to be taken seriously as TIAs are diagnosed on symptoms.

    The memory problems and foggy head and headaches on a constant basis are hard to deal with ... no wonder we get depressed.

  • I have the same situation. The Neurologists have some basic tests they do and base evrything on the MRI. I also notice that the males in my family are taken more seriously when they complain of ailments. My son went to the ER with back pain and was immediately given pain killers. It took two days of a worsening extremely pain in my intestines caused by blood clots to get any assistance. I guess it's partly our own faults going through natural childbirths without any pain killers. I also might as well vent my frustration with being told I look healthy (yeah - after not being able to get out of bed without high doses of steroids!) So, I undestand and feel for you.

  • Yes a common theme - neurologists v sticky blood, it seems to cause problems for high numbers of people. Mary F x

  • I think this is such a worrying issue.

    I saw my neurologist this week He was rude and ignorant and even shouted at me (I will not let him get away with this again).

    We discussed my deteriorating memory and fortunately my husband came in with me and backed me up.

    Last time I saw Neurobod he told me I had white matter and nerve damage to the brain along with small vessel disease.

    This time he said that the Neuro psychologist said that my bad memory was probably being caused by my anxiety! Whilst this could be true in part it is not the complete picture as my anxiety has improved significantly recently but my memory is worse despite being on Clexane.

    I am so grateful to MK, who I see at St T's., He knows what is wrong with me and supports me in a very kind and caring manner.

    Like the previous comment I get sick of being told I look well. It's a bit like saying to a gay person 'well you look straight'! How dare people make assumptions it's tantamount to being told you're a liar.

    Take care ranting buddies

    x

  • Hi Kathy

    Like Sue I have found Neurologists to be dismissive of us APS sufferers and both of the ones that I have seen have discunted TIAs because of the lack of MRI evidence and despite Prof Hughes backing me up. One neurologist is very pleasant while the other one is arogant and rude, almost as bad as Doc Martin, if you watch that programme.

    What neurologists can't seem to understand is that our TIAs are often caused by a general sludginess of our blood and not by a particular clot. Dr. Peter Savundra, the Audiovestibular Consultant who I saw in London last month following a referral to him from Prof Hughes, fully understands the mechanism of our TIAs and was a wonderful, friendly, patient centred man, to who nothing was too much trouble. He said let's not say that you have TIAs or Migraines, what you have is Hughes Syndrome and the TIAs and migraine are symptoms of the Hughes Syndrome and cannot be separated from it. He was also very fed up with neurologists not understanding APS.

    Best wishes.

    Dave

  • I completely agree with Dave and also the others as I have the same problems as you have.

  • I wonder if I'm the only regular on this site who has an understanding neurologist? Mine suspected APS right off the bat when I was referred to him following my first TIAs/ ministrokes. A subsequent referral regarding last year's sciatic nerve issues lead him to point out that APSs can cause a host of elusive symptoms which can be difficult to firmly attribute and effectively treat.

  • But Kathy, this is a problem nearly everyone on this site has reported having: we know that we're NOT the professionals, the docs are and we're consulting them for their expertise.

    But then, one of them will maintain a position that, while defensible on the face of it, runs counter to our experiences as patients -- you know, the consciousnesses that live inside the malfunctioning bodies?

    Which leads us to a line in the sand: at what point do we reject the educated, professional's judgement and tear off on our emotional, and intellectual, own? And, once we make that break, to whom do we turn for the practical, physical treatment we need to "fix" our problems?

    Well . . I don't have anything to offer on the practical or physical side -- but I send out all the positive vibes and thoughts I can.

    I hope things get better.

  • we need to get a voice..and make ourselves known. start with the 'known'..stroke association is a start..in our communities. my stroke support worker says she has never known of hughes until me, and she is prepared to make waves here we have to think ahead, much love x

  • Hi there! yes I agree 100%. Ive never had a TIA nor a stroke however my memory is shocking. I have over the last few years especially enlisted a dear friend of mine as well as my hubby to be my memory!!

  • not sure how correct he was but when i thought i had a tia last year after having a bout of double vision for a couple of minutes. my neurologist sent me for an MRI which came back clean he said it would have shown marks if I had one.

  • Hi Kathy, interestingly, I've had the same problems with my short term memory in the past and still do. I understand what you're talking about. I originally had a powerful CVE in December 1999, my left arm went dead on me, and my entire left side was affected by numbness. The CVE was only confirmed in 2007! I was having multiple TIA's till my warfarin dose was increased. I've been to a memory clinic for tests which I passed 99.9% but occasionally still have problems. I've had brain scans too, nothing found. Re: short term memory, I have good days and bad days when I have "fog on the brain". Hope this helps.

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