Sticky Blood-Hughes Syndrome Support
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Has anyone with memory issues had a neuropsychological evaluation done?

My new neurologist referred me for a neuropsychological evaluation. I've had this test done before and it took about 8 hours. The last time I had it done the results were labeled "not reliable" and "inconsistent" which basically sums up my memory issues. The person writing the report explained away the inconsistencies by stating the testing environment was not ideal (a tech who never implemented the test tested me and it was done in a small room with no air conditioning in the summer). The report also mentioned she thought my inconsistencies were because I was a perfectionist (ha!)

Over the course of a day my memory varies - sometimes I remember things and other times I struggle.

Has anyone else had this evaluation done? If so, were your results similar to mine? I

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I have had this done. Mine was divided into 2-3 hour sessions over a couple of days. I was told I did very well, although when I went through the process I didn't "think" I did very well! What are you concerned about? My advice to you is when you are scheduled to go. Make sure you get plenty of rest the night before, have small protein snack before you go and dress in layers so you can add on or take off as temperature warrants. Do not do any reading or anything requiring concentration before going. Have your mind as rested as possible so you go in alert and ready to begin at your best mental state. What is your concern?

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The person that administered the test said I was doing well throughout the evaluation too. It wasn't until I received a written copy of the results that I realized I didn't do as well as I think I did.

I wouldn't say I have a specific concern. I was curious to see if people with APS that have had this evaluation done had 'inconsistent results'.

I know I was mentally and physically exhausted after I did this test 2 years ago- I'm not really looking forward to it again : /

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What I was told and the results were the same, they were congruent, and yes it is exhausting I was preparing for surgery when they did mine, was mind boggling. Good luck

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I have not had one of these but I am sure others will have had similar, it will be interesting to see what people experienced with this. MaryF

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I've not had the test, but I have subjectively noticed that if my INR is below my reference range I will become confused easier. For example, while processing into church at a dignified but very slow pace, wearing my long choir robes and singing a multi stanza hymn, if my INR is too low I am more likely to have wobbly balance and to veer off the proper stanza from line to line. For example --we're supposed to be singing the third stanza but when I hear that the rest of the choir is singing different words from mine I see that my eyes moved back to stanza 2 at the line break. Oops. Embarrassing. But the good part is that this is a good "tell" that it's time for me to get more blood work. Happened yesterday, so Im off to get a stick today. ( I'm guessing I'm at 1.5. )

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Hi Gina,

I have been singing in choirs all my life. Went to a music school and gymnasium. Before I started Warfarin I could not stay in my church-choir any longer as I saw double, my vertigo made it imporssible to hold the notes as I had to hold on to something. Bad balance.

After Warfarin at the right level those symptoms disappear and now I could start again but I do not know if they want me as I am over 70 and have not been singing for almost 10 years.

Why not increase your Warfarin? I think you need to have a higher range.

Kerstin

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Give it ago maybe. Im sure they would welcome you and that you will quickly get back into the swing of it.

I was the only one rejected for the school choir, which we were told was desperate and would take anybody!

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Following Cleveland clinic's dietary changes has resulted in my being able to tolerate a much lower INR. I will never go back to eating the number of Empty carb foods but I used to eat.

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Hi Gina,

I am following a a very healthy diet. On the contrary, as it seems, I need a higher INR today than 5 or 6 years ago. Could be that I now selftest often and keep in range and notice if I am too low. Now I know how it is to have symptoms from APS and I avoid them if it is possible of course.

I think I will restart painting rather than singing again.

Kerstin

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I was referred to neuropsych and had a full range of tests, the only thing picked up was "slight disfluency". I was discharged as all my scores were well above average. I still think I am below where I used to be, but I have no baseline result to measure deterioration from - until now. Even though they did nothing, getting that baseline test result may well be useful in future.

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Hi Jean

I think that stress etc can make one heck of a difference to results on cognitive tests. It could send someone from the top of the class to the bottom. And the environment, and test purpsoe, can create a greatdeal of in-test stress. So I wouldnt worry too much if got inconsistent results last time.

tbh since I got hit by various known and unknown autoimmune conditions, Ive becme a bit obessessed with testing my cognition on line. Ive convinced myself that my brain is now almost non-functional! Though when I do the "daily challenge" on Cambridge Brain Sciences, it puts me as scoring higher than 99.55% of others who have taken the tests. I think its my memory which is shot and the 4 daily tests dont really test that.

I think the tests are driving me mad tbh! I know I find it hard to think creatively anymore as well. Its like parts of my brain no longer joins in. I know i have quite a lot of lesions and this could be part of it I guess. I also know that I can write soemthing, and then read it back and its not what I thought had written!

Anyways, good luck if you do the tests. Sorry, started going on about me!

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So when are you having it done?

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Called to schedule - first opening is at the end of September!

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I've had a neuropsychological assessment done too a couple of years ago. Like Wittycjt mine were done in 2 hour sessions but 2 weeks apart. My INR was stable at that time at 3.5 ish. My results varied immensely, at one end of the scale remembering numbers in blocks of 3 was the best she had ever seen, absolutely no use in daily life, at the other end were basic puzzles and different coloured doors which was verging on the worst, no wonder I'm always getting lost. End result "I had learnt to cope well and no further action needed"

Just off to have my annual visit with Dr Holmes at Guy's now, lovely man.

All the best x

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Just wanted to give an update

I had an appointment with my neurologist yesterday and asked him about taking my medication on test day. I am currently taking Lovenox injections so my INR is not monitored. Last time I did the neuropsychological test I took the Lovenox on my lunch break (which I think played a part in my results bc I can definitely notice a difference in myself a little while after taking it).

I asked my neurologist if I should take the blood thinner as I usually do (at noon) or first thing in the morning before the test. He wasn't sure if it would be better to see me in my "usual" routine (taking Lovenox at lunch) or if they would want to see me at "my best" and take it first thing in the morning. I guess I'll call the doctor administering the test and see what she wants to do.

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Hi, read all of your post, the answer is what do you want to get out of this test.

If you want to compare against your baseline of last time then take at lunchtime.

If you want to get you at your best take in morning.

The last alternative would be to take after, this would show you at your worst but would risk your blood clotting.

Im not sure the Doctors can answer you - what ever you do, will be thinking of you & good luck xx

Let us know how you get on?

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