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Hughes Syndrome APS Forum

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Memory

daisyd profile image
8 Replies

My memory has got really,really bad , much worse over the last coupe of weeks I am only in my early sixties and getting very jealous of people who are 100 + who have perfect memories, don’t think the heat helps and my inr has been in range, which reminds me I better check it again

Just wondering if stress had made it worse expect it does, anyway feeling really p off

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daisyd profile image
daisyd
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8 Replies
daisyd profile image
daisyd

Sorry, I know I am luckier than most, their is always someone worse

Fra22-57 profile image
Fra22-57

I know it's so annoying.It stresses me when I cant remember things and it's so embarrassing at times.Have you had a memory test with your gp.

daisyd profile image
daisyd in reply toFra22-57

Yes I am lucky enough to go to st Thomas in London and see Paul Holmes in guys he a brilliant neurologist I hadn’t realised there were any

I have scans every two years and had memory tests all have shown that I have antiphospholipid lipid syndrome in my brain, wish my local neurologist had been trained properly or least updated him self years ago

Just feeling a bit down and stressed at the moment which I guess is the reason for noticing more. Thank you

Stella profile image
Stella in reply todaisyd

Sorry you are feeling down. I also have brain damage because of APS and, I too, was not treated until after more damage than necessary. It is an ongoing battle but having the right INR helps. I was also put on hydroxychloroquine after seeing Paul Holmes and it has certainly helped with clarity of thought. My memory is poor but I cope by making lists/notes as an aide memoir. Sometimes I find if I am told about something I have done but completely forgotten, if I just let it settle in my mind I will often remember something in the past eventually. Other things are gone forever! If I am stressed or a quick response is required, then I struggle. It is helpful to rehearse a difficult conversation in your mind and keep relevant notes to hand. My hands don't work properly but by using voice activated email/texts, I have something to refer to when trying to remember things people have told me. Having said all that, I am finding that a lot of friends my age (66) are having increasing problems with memory. Sometimes I feel I have the edge on them because of my coping mechanisms!

nonny profile image
nonny in reply todaisyd

Hi daisyd,

Just wanted to say that my experience very much mirrors your own.

Dr Paul Holmes really is lovely and after MRI’s it was discovered that the Antiphospholipid syndrome had affected my brain and I have Small vessel Ischaemia which means I have a rubbish memory, poor balance and issues with headaches.

However anti coagulation, in my case Clexane, has held this at bay and although there has been some deterioration and you’re right stress does make it worse I have coped with this since 2008 and still manage everyday life with not too many problems.

Hope this helps a little.

Fra22-57 profile image
Fra22-57 in reply todaisyd

Try not to get upset and stressed.mine us cerebral too.I find it helpful to use calendar and write everything on it so I dont forget hospital appointments,birthdays..even grandchildren ages..always having to Google things as brain wont complete crosswords.

If you feel you have really deteriorated thou I would contact your consultant. Sounds like you are well looked after by him

MaryF profile image
MaryFAdministrator

It is very difficult the brain fog with this disease and other associated things, mine ebbs and flows but certainly with bad thyroid function, low Iron, low D and Low B12 it was very much worse, alongside the diseases I have. MaryF

Wittycjt profile image
Wittycjt

And i thought mine was due to my strokes and im not even sixty yet... i recently was told i forgot about a whole two weeks of staying at my in laws- very humiliating- i feel your pain. Chin up my friend!

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