Memory problems

[TJSTICKYBLOOD]

Is anyone having treatment for memory problems or had some sort of assessment to ascertain how much memory has been lost (not a brain scan though)

[jetjetjet]

hi blood , i have a problem with this, not much being done rite now but !!!!!! after next week maybe i can give you more positive imput. with me it comes and goes, of course when you least expect it .it is a bummer when you are in mid conversation and lose all train of though , and the person you are talking to looks at you like you have 2 heads / both of witch arnt working. maybe there is somthing they can do for us. i will let you know what i can find out, hopfully something positive bfn jet

[TJSTICKYBLOOD]

I asked my consultant and they said there was nothing as they already knew it was from hughes, but a friend had an assessment by occupational health and it highlighted problem areas. I want to know for my own knowledgw and also I can tell work about it in detail so they can make reasonable adjustments under the DDA. It will also help with my DLA claim. I also get a lot of confusion I asked a friend if her mum was going to her wedding even though I had attended her mums funeral my brain was saying to ask if her dad was coming and not her mum but I said her mum. At work I used to think I was stupid as I kept forgetting what I was supposed to be doing now I know that it is my condition. I put things in the oven and forget to turn it on I takre things out of the oven and forget to turn it off. I've left my keys in my front door numerous times and my neighbour luckily has knocked and given them to me.

[SueLovett]

Hi,

I have terrible problems with my memory, e.g. watching a programme with adverts and the time the adverts have finished I've forgotten what I've been watching!

Also we went away for a week, recently, when I got home I couldn't remember which cupboards things were in. Drives me mad!

My Consultant takes the view that it is because I have damage due to 'mini strokes'. This does not explain, however, why it is intermittant.

Take care Sue

[daisyd]

Hi to all with memory problems. I could join this club as well, awful isn't it.

I know my problems improved a lot not perfect though, since being on Clexane and then warfarin My INR should be 3.5 It works like this

Most ''normal'' people can manage on full cream milk INR of 1ish..Heart attack patients, some stroke patients have to have semi skimmed milk 2.5 and we should have skimmed 3.5 which Warfarin helps to thin the blood this not very stable though so warfarin dose has to be altered when my blood is at the full cream or semi i am the same as you.

back to the question I was seen by a neurologist for years who failed to diagnose me, eventually after approx 10 years I saw one who seemed to know a little bit more.

Its a long story but thanks to a Heart attack Hughes syndrome was diagnosed.

I was put on the Clexane etc and the fog lifted.

The neurologist (local) refered me to Queens square the test was 2 hrs.

THe Haemalologist from St thomas's refered me for neurlogical tests at Guys it would have been a five hour test which would have been better but I didn't know wwhich refered me to where so i only had the 2 hour test.

5 would have been more thorough, will have another i think in 6 months i will make sure it is at Guys.

If you can get to St Thomas's I really trust them there as they know what they are doing.

Hope this makes sence

Love Karen xx

[TJSTICKYBLOOD]

It was at St Thomas's I asked I didnt see my normal consultant they are seeing me in 3 months so I will ask again.

[jetjetjet]

like i have made mention before my 1st neuro gave me a test , gave some names, we talked ,then he asked to repeat the names , i did , didnt prove much simply because i cant pick an choose when i will or willnot remember things, he agreed . second neuro when she learned i was a drinker, made a coment , i may of killed a lot brain cells ???? i had to say i never had a problem remembering any thing till a.p.s. came walltzing into my life. since, as she is learning more of a.p.s.she is taking a different otlook. she said there are drugs to treat this BUT AS USUAL i cant take them, may be rheumy will make a diffence jet

[SharontheSheep]

hi TJ

most of the time I can laugh off the memory probs (like forgetting how to pull my trousers up after going to the loo - thanks hubby, yes my legs were getting cold and I was fully aware that my trousers were down I just couldn't work out how to get them back up!!!) and sometimes it's really sad when I don't remember where my little girl is and get really frightened that I've lost her (she's at school). I had some tests but you are so right, at the time of the tests I was functioning well. Right now I can't work at all and slips ups that were a couple of times a week are now a couple of times an hour. I'm back to Tommies next week so hopefully things will get sorted then.

My work have never questioned that APS and my migraine/arthritis/pain meds affect my mind. I wish yours was more supportive.

Love Sharon

[ZoeDwek-Adams]

hi there.

yes i am now having intermmittent memory problems - short term memory loss that is. i have started playing bridge and often lose the thread - to my embarrassment early on in the game - but i carry on. i am now in my mid sixties and wondered how much the memory loss is due to aps and how much is due to getting older as many people of my age without aps seem to be forgetting stuff!! i try very hard to use mnemonics to remind myself what i have to do and i find this useful. however,i find memory loss quite distressing although i am able to cover it up at the moment.....but i know i have a problem.

[jessielou]

Hi all

I have short term memory problems, biggest issue is losin what i'm sayin part way through a sentence. Oh especially on phone!!! Studyin for degree, i work through chapter. Make notes, go back to it, then can't remember doing it. Gonna take a while this degree me thinks!!!

Tommies refer me to memory clinic will see what happens.

Take care gentle hugs sheena xxxxxx

[TJSTICKYBLOOD]

Jessielou has st thomas referred you to s memory clinic?

[Stella in reply to TJSTICKYBLOOD]

Hi all, have only just got around to reading this one so apologies for the late reply. I, too, have severe memory problems. I try all sorts of tricks to remember names etc but with limited success. I think my lack of memory hinders me tremendously, particularly when it comes to using the computer as I consistently forget how to do things, much to my husbands frustration! Some months ago I volunteered to do research with a trainee clinical psychologist carried out at St Thomas's. In fact, it was the same standard tests that I had done before. However, she did send me a copy of her findings: 'results showed that people with APS thrombosis characteristics were twice as likely to experience memory and thinking problems compared to those with APS pregnancy complications. People with APS thrombosis characteristics also demonstrated decreased levels in their general intellectual abilities when compared to their abilities before they had APS. Furthermore, in comparison to those who do not have APS (control group). People with APS thrombosis characteristics did not perform as well on the tests of memory and processes that require flexible thinking such as initiating or stopping actions, switching between different tasks and situations as well as skills related to moving small muscle groups e.g. hand finger muscles used for drawing. Those with APS pregnancy complications also performed more poorly on these measures compared with the control group. Although not significantly.' Hope this is useful to you,

Stella

[jessielou in reply to Stella]

Hi Stella

excellent info hon Thankyou.

Could be me its talkin bout too.

Take care gentle hugs jessielou xxxxxxx Sheena xxxx

[paddyandlin in reply to Stella]

Thanks stella some good advice and info there

[jessielou in reply to TJSTICKYBLOOD]

Hi tj

sorry tried to reply earlier but problem with lap top.

St thomas's asking gp to refer, and surprisingly gp thinks st thomas's should do it. As far as i know only memory clinic in London. Anyone know any others??

Hope you not feelin to bad today.

Take care gentle hugs jessielou xxxxxxx Sheena xxxx

[spider7 in reply to TJSTICKYBLOOD]

Hi I to have memory problem s I even get my children s names wrong I forget phone message and things people have told me. I have never heard of a memory clinic. Will ask my gp. I also get a lot of pain in my head. My gp sale loss of memory was due to my pain medication and not antiphospholipiid . I had a brain scan and that came back normal for someone of my age 53 would like to get some help as it is so frustrating.

[Lure2 in reply to spider7]

It sounds like your GP does not understand Hughes Syndrome.

My memory is not very good either but after I started Warfarin most of the neurological symptoms disappeared. I have an INR of 3.2 - 3.8 and I selftest. Usually I keep in the right INR-level which is very important.

I now have forgotten if you are on Warfarin. If so have the memory not got better after you started to thin the blood?

Try to find an APS-doctor that understands what APS is about.

Have you read "Sticky Blood Explained" by Kay Thackray. Very good book about APS. She has APS herself and talks about the different symptoms and how it is to live with this rare illness.

You have answered on a 4 year old question now.

Kerstin in Stockholm

[spider7 in reply to Lure2]

Thanks I am on warfeen my inr is between 3 and 4 but it is all over the place my be that is why I still get the head pain

[TJSTICKYBLOOD]

Stella what an informative post this fits me exactly.

[Herb]

You can get a referral to a Neuropsychologist, any large hospital will have one, who will do objective tests of memory.

The problem with this might be that one day you could be fine and another day you can't write or remember your address, it depends on how you feel on the day you see them.

[TJSTICKYBLOOD]

Thanks @ herb and everyone else for replies help and thoughts.

[Hidden]

Join the club ! My memory is so bad its embarassing now - my friends look at me gone out as if I am stupid and my family just laugh because they obviously dont understand APS - Yes we are embarassed and some situations are worse than others but I have learned to go along with it either laugh with them or ignore the comment or the look !!! I was advised to read or try Suduko or challenge crosswords but as soon as I read I forget what i have read. Its like a thick blanket - Nothing sinks in !! Try and keep the brain active in some way-mine I think has disappeared !!!

[taffydaffy]

Hi

I have had short term memory loss for years but last year i got scared as i forgot i had a mother and father my gran and aunt both had dementia so i asked my G.P to refer me to a memory clinic i saw a psychiatrist he did a brain scan and i had small pieces of plaque on my brain but he said i needed more tests so anyway i have been D.X with Mild Cognitive Impairment so i know i am not going mad and it's not all in my mind i seam to be collecting illnesses all the time the new one is Anemia of Chronic Fatigue plus Osteoarthritis x oh and i can't spell very good now lol

[paddyandlin in reply to taffydaffy]

Hi Taffydaffy,

welcome to the group you are not alone i think all of us as more than one illness i think its part of the APS memebership you cannot be a aps memeber without ........ lol

It is always good to know you are not going mad!!

paddy

[taffydaffy]

I have bean dx with mild cognitive impairment iasked my g.p to send me to a memory clinic had a brain scan and lots of silly little tests that i could not do lol and guess what i am not mad