Sticky Blood-Hughes Syndrome Support
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Brain cognition test

Went for this test today on the advice of prof Hunt. Unfortunately I wouldn't be surprised if my results aren't up in London by my appointment on 5 dec, especially as I'm being seen in a different clinic at guys rather than St Thomas.

I couldn't believe that I struggled so much with things in the test. I'm sure before I had my 'stroke like episodes' I would have done much better!!

Have felt really fed up, upset and tired since getting home :(

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I went to have the test at at guys I was seen by Dr Heather Rawle, the Clinical /health psychologist she is from the department of Haematology at Guys.

if prof Hunt advised you to go, that's good .? The 5th is to get your results, and advise about things that can help your memory. Please don't be fed up you are really being seen by the best people.

You will probably feel better about it after a sleep. I does take it out of you doesn't it

This syndrome is really awful isn't it my memory is really bad too, I hate it

Good luck

Karen xx

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Well Done for going! Sometimes you do better than you think on these tests as they are meant to test you!! Also dont worry that it was done at a different Hospital as Guys and St Thomas are all part of the same group.

As Daisy says hopefully you will feel better after a rest. Please let us know how you get on. x

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Thanks both of you. The test was done in my local hospital in devon so the neuropsychologist here has to look at the results and then send a letter to London.

I've had a sleep as was exhausted. Luckily I had a couple of breaks during the test because it took over 2hours. I then missed the bus and had to wait nearly an hour before the next one home.

Lazy day tomorrow!!

Jane

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Well done Jane, at least you have had the test so will know what you're dealing with soon. Frustrating though, I am struggling with concentration and poor memory at the moment so I absolutely feel for you. A good rest, long sleep and you will hopefully feel brighter about things in the morning. x

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Thanks lissylou

Although I didn't sleep well as usual, you were right. I've had a restful day and, apart from falling over and giving myself a fat lip, I have had the chance to sit and think about yesterday and feel a lot happier.

Thanks for replying

Jane

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I went for these tests as well Jane.

I must say that it was four and a half hours of my life that I will never get back.

Like you I struggled with some of the tests . I can't imagine who sat down and devised them!

The resulting report said that I was above average intelligence (really?) and Superior IQ (really?) but I had a terrible memory only 25% of average! (Could have told him that!) The Neuropsychologist came to this revelation after me pushing around various puzzles etc. I was also very slow at doing tasks, timed out on a couple of them.

As usual my concentration was poor and Doctor said 'You're bored aren't you?' Accurate comment but I get even dizzier when I try to concentrate so it looks as though I'm not paying attention but in reality I get distracted because I can't think.

Still I don't get out much!

xx

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Hi sue

Rather glad others have felt the same as me!! I expect the answers I will get are things that I could have told him too!!

Your last paragraph is me exactly!!! One of the worse things is if I'm being asked lots of questions - it all gets too much and it's like I've switched off because I can't concentrate and think of answers at the same time - almost like a system overload I guess!!!!

Thanks for replying

Jane

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I sometimes have to make myself heard rather loudly when others bang on and on and its all going straight over my head! I just shout "STOP Stroke Brain, nothings going in"! That gets their attention and they have to start again and repeat it very slooowly!! lol.....the other thing is I dont think they understand just how exhausting it is to concentrate on instructions and long bouts of verbal diarrhoea!!

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So true APsnotFab!!

Ha ha I must remember that!!!

I have hearing aids too which adds to concentration problems especially if there are a lot of people around or background noise.

Oh the joys of APS !!!!

Jane

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Have got the tests soon so your answers hace been very helpful, esp re the concentration and too many things at once.

Must remember to tell them overloaded not bored!

Hopefully I will learn a little more as have been told the tests will show where my strengths and weaknesses lay.

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Hi pagan. Yes the tests will show this. They confirmed some of what I already knew (though I haven't had the results yet ) that I can retain basic info but the more I am given, the more difficult it is to remember anything. I just felt that I was sounding so stupid when I couldn't think of answers.

Make sure you ask for breaks as although they appear simple tests, even though I struggled on some, it is exhausting. They usually last at least 2 hours. Ask for some water too before you start . My throat got very dry.

Hope your test goes well when you have it.

Thanks for replying

Jane

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Hi JaneThank you very much for replying and the tips, I have made a note to take water and ask for breaks.

Like you I retain basic info but too much at once or too fast and the overload switch kicks in and I go blank. Maybe that is part of the test to see how you cope with it, I will find out no doubt!

Thanks again

Pagan

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Hate to tell you this Pagan but the tests are actually BORING. Can't understand how Psychologist can sit there and go through them with people day after day!

Mind you I've always been more creative than practical so maybe it's just me.

I also agree with Patsy the more bombarded you get with info the more your brain can't function and it all ends up like scrambled egg.

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I had 6 hours of neuropsychology tests with Heather Rawle at St Thomas' Hospital, as part of the diagnosis period 6 years ago. I was struggling with multiple medical problems, bereavement, recent divorce and full time work in the NHS! Heather was brilliant and patient. The tests were exhausting at the time, but diverse and interesting and designed to capture all aspects of brain function - cognition, memory (short term and long term, problem-solving, sequencing etc, etc. Prof Hunt also decided that my 'hard drive' was full, which I thought was a clever interpretation of a hectic, stressful and multi-tasking life the brain has to deal with - on top of APS!

Stick with the tests - they are worth it and we are lucky to have them made available to us.

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BTW - the 6 hours were over 2 sessions - not in one hit!

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Interesting she refers to it as a hard drive. i always explained my cognitive problems to Docs in the same way. I would say that it was if my brain had either suddenly done a blue screen of completely crashed and I had to wait for it to reboot before I could continue with a conversation or with what I was doing. I think Doctors can relate well with that.

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