Memory tests are low, but still no diagnosis

[Sweetpea46]

]Hi,

My Husband is a 40yr old police officer, he has, as you would expect always had a good memory. however a couple of years ago it started to decline, slowly at first, explaining the memory loss as tiredness or just age related forgetfulness. He then started to experience some very strange symptoms.

i started to get painful cramps in my foot, or arm, or hand, which resulted in my legs cramping so badly he could hardly walk for a few weeks, it was a pain he had never experienced before. the doc sent him for ultra sounds and blood tests and they all came back clear. over the next few weeks it seemed to clear up on its own and thing seemed to get back to normal.

Then last year it all started again, His memory since this time has got terrible. he has to write everything down, he get confused trying to drive of a supermarket car park. he also had cramps in his chest and was taken to hospital to check his heart, however after testing they dismissed it as muscle cramps.

He cant remember what day it is, and sometimes forgets if he has even eaten. he has been seeing a neurologist now for close to a year. who was quite dismissive at first, saying it was possible stress. however my husband insists he has very little stress in his life, which i agree, we are quite lucky and don’t have any stress. His Mri scans came back clear. and his bloods were ok, they did show a raised LFT, but the neurologist said that was marginal.

He went for some Memory testing and had an addenbrooks test, he scored 77/100, which the neurologist told me was a low score. he scored,
attention and orientation 15/18,
Memory 13/26
fluency 9/14

the neurologist now suspects it may be an organic problem, he sent my husband out of the room and then mentioned to me the possibility of dementia but still wont make a definite diagnosis and i am worried that as time passes my husband is not being helped, i would have liked him to have some medication to help him but he has now been referred for psychometric memory testing so wont be seen again by the neurologist for another 4 months.

any help, or advice would be very much appreciated as i am pulling my hair out with the frustration of how slow the process is.


thank you for reading tihs

 

[marionq]

Have they done a brain scan yet? This would seem to be the obvious move to rule out dementia if there is any doubt.

 

[Sweetpea46]

Yes MRI was of the brain and clear. But memory tests were worryingly low

 

[Sweetpea46]

Also, he has started to get frustrated a lot more lately, seems to have a lot less patience,

 

[triumph25]

Hi nick,

So sorry that you are not having a lot of luck and that everything is taking so long.

It took me 18 months before my oh was diagnosed and then it really only happened after his firm got involved.

I wanted to ask is your husband still working, & if so don't the police federation have private health insurance and or occupational health that could possibly speed things up?

It may be that like us you are reluctant to get his employers involved. And I have to say in our case it did result in him losing his job, but if you can make use of the health insurance you could ask for a private cat scan that may help with the diagnosis?

 

[Tottz]

]Hi,

My Husband is a 40yr old police officer, he has, as you would expect always had a good memory. however a couple of years ago it started to decline, slowly at first, explaining the memory loss as tiredness or just age related forgetfulness. He then started to experience some very strange symptoms.

i started to get painful cramps in my foot, or arm, or hand, which resulted in my legs cramping so badly he could hardly walk for a few weeks, it was a pain he had never experienced before. the doc sent him for ultra sounds and blood tests and they all came back clear. over the next few weeks it seemed to clear up on its own and thing seemed to get back to normal.

Then last year it all started again, His memory since this time has got terrible. he has to write everything down, he get confused trying to drive of a supermarket car park. he also had cramps in his chest and was taken to hospital to check his heart, however after testing they dismissed it as muscle cramps.

He cant remember what day it is, and sometimes forgets if he has even eaten. he has been seeing a neurologist now for close to a year. who was quite dismissive at first, saying it was possible stress. however my husband insists he has very little stress in his life, which i agree, we are quite lucky and don’t have any stress. His Mri scans came back clear. and his bloods were ok, they did show a raised LFT, but the neurologist said that was marginal.

He went for some Memory testing and had an addenbrooks test, he scored 77/100, which the neurologist told me was a low score. he scored,
attention and orientation 15/18,
Memory 13/26
fluency 9/14

the neurologist now suspects it may be an organic problem, he sent my husband out of the room and then mentioned to me the possibility of dementia but still wont make a definite diagnosis and i am worried that as time passes my husband is not being helped, i would have liked him to have some medication to help him but he has now been referred for psychometric memory testing so wont be seen again by the neurologist for another 4 months.

any help, or advice would be very much appreciated as i am pulling my hair out with the frustration of how slow the process is.


thank you for reading tihs

Hi,
This is a total wildcard, but does your husband take statins?
A few years ago I was put on a main stream statin that gave me muscle cramps - especially at night, confusion and memory problems. At the time (before I knew anything about dementia) I described it as feeling as if I had dementia, I also felt ill with it.
As I said this is a wild card suggestion.

 

[Sweetpea46]

Hi nick,

So sorry that you are not having a lot of luck and that everything is taking so long.

It took me 18 months before my oh was diagnosed and then it really only happened after his firm got involved.

I wanted to ask is your husband still working, & if so don't the police federation have private health insurance and or occupational health that could possibly speed things up?

It may be that like us you are reluctant to get his employers involved. And I have to say in our case it did result in him losing his job, but if you can make use of the health insurance you could ask for a private cat scan that may help with the diagnosis?

Hi, to be honest his occupation health department have been quite rubbish, they are happy to sit back and wait for the neurologist to do all the work. he is still at work but with certain restrictions. the worst thing is he doesnt see his memory is getting worse. so when people ask how he is doing his reply is always FINE.

We have noticed lately his spelling is also getting bad too. he will jumble the letters of even simple words.

he takes no medication, is physically fit, and strong. he used to go weight lifting 4 or 5 times a week but he has no motivation to do anything lately. and he is becoming very short tempered. this is not like him at all.

 

[Sweetpea46]

also can anyone explain his addenbrooks score, it was this that actually made the neurologist do something !

he scored 77/100, which the neurologist told me was a low score. he scored,
attention and orientation 15/18,
Memory 13/26
fluency 9/14

 

[nitram]

Assume test was ACE-R

 

[Sweetpea46]

Assume test was ACE-R

im sorry that table means nothing to me? can you explain in simple terms ?

 

[LYN T]

Yes MRI was of the brain and clear. But memory tests were worryingly low

MMM! Pete's Neurologist said that his scan was clear-but when Pete's mh consultant looked at the same scan two years later it did show dementia. (I wish I could name and shame the Consultant). Could you ask for a second opinion on the scan?

Take care

Lyn T

 

[nitram]

Table 1
If the assessed score for any function is below that tabulated for the age range there is a high chance of impairment in that function. The lower it is the higher the chance.

Table 2
Sensitivity, specificity,PPV and NPV define the reliability of the assessed data.
Details >>>HERE<<<

ACE-R is not the only Addenbrooks test but it is the one most used especially since MMSE was bought out and became 'paid for'.

EDIT
It was most likely the Addenbrooks ACE III which is a revised ACE-R.
ACE-R contained elements of the copyrighted MMSE and had to be discontinued.
The only normative data I can find on ACE III is limited but on first sight it looks as if the cut off for fluency may have been slightly lowered.

 

[Sweetpea46]

Table 1
If the assessed score for any function is below that tabulated for the age range there is a high chance of impairment in that function. The lower it is the higher the chance.

Table 2
Sensitivity, specificity,PPV and NPV define the reliability of the assessed data.
Details
ACE-R is not the only Addenbrooks test but it is the one most used especially since MMSE was bought out and became 'paid for'.

thank you, thats gone striaght over my head, but it explains why the neurologist is actually interested now. can i just ask then? what is your personal interpritation of his results ?

 

[nitram]

The results have to be considered alongside other data e.g. observation of person.

The consultant will have personal knowledge to help with interpretation especially with a person 10 years younger than the youngest group in the data.

Comparing the lower value cut off obviously gives reason for further investigation.
The test has also provided a bench mark to judge rate of progression in any further tests.

                                       50-59 age                   Your aged 40 husband
Attention & orientation                  17                                 15
Memory                                   18                                 13
Total                                    86                                 77

 

[Sweetpea46]

The results have to be considered alongside other data e.g. observation of person.

The consultant will have personal knowledge to help with interpretation especially with a person 10 years younger than the youngest group in the data.

Comparing the lower value cut off obviously gives reason for further investigation.
The test has also provided a bench mark to judge rate of progression in any further tests.

                                       50-59 age                   Your aged 40 husband
Attention & orientation                  17                                 15
Memory                                   18                                 13
Total                                    86                                 77

a BIG Thank you, you have gone out of your way to explain this to me. i really do appreciate it. thank you so much.
Sarah.

 

[Sweetpea46]

well, we are still waiting for the psychometric memory testing , i understand it can take between 5 and 8 hrs. does anyone have any examples of what to expect ? i dont really want to leave him alone for all that time.

 

[Linbrusco]

well, we are still waiting for the psychometric memory testing , i understand it can take between 5 and 8 hrs. does anyone have any examples of what to expect ? i dont really want to leave him alone for all that time.

So sorry to hear about your husbands difficulties at such a young age.
I'm a member on this board as my Mum has Alzheimers.
However my husband had to have psychometric testing back in 2006 following surgery and treatment for a brain tumour. He was diagnosed in 2004 at age 41.

From memory the actual testing took about 4 hrs.
Prior to this we spent an hour talking to the Neuropsychologist. He went over my husbands childhood, schooling, education and work life. When we got married, how many children we had. His health, his surgery, treatment, what symptoms he had been experiencing since, his mood, his future. It was pretty extensive and exhausting as I had to do a lot of talking on DH's behalf as he had speech issues. I wasn't present throughout the testing.

I still have the report, and it measured 12 different tests across these areas.
General Mental Abilities, Verbal and Language Abilities, Memory/Learning Functions, Attention/Concentration and Speed of Information Processing,Visuospatial Functions, Frontal Lobe/Executive Functions and Motivation.

My husband was very mentally drained after this testing and slept alot for the next 24 hrs, but more likely due to his health condition.

Hoping you get some answers xx

 

[Merrymaid]

As your husband is a serving officer I would suggest you contact the Police Federation for assistance in his diagnosis/welfare. Generally when they put their weight behind issue's regarding the well being of their members things start to move along a bit. Also the occupational health should be poked into action. All this should be able to be kept confidential should your husband wish. Good luck!

 

[chick1962]

I would not inform police oh my husband was a police officer with similar problems, low scores, memory problems and so forth. They waited for consultants reports and restricted his work to office work which he found even more difficult ie computer work as spelling had also declined as well as concentration. After a year police ask for him to see their doctor who said he was no longer capable and therefore unable to do his job and sacked him on sick attendance!!!! Most stressful and heartbreaking and disgusting treatment ever for my husband. Still get v angry and upset when I think about his treatment by the police force. He eventually got diagnosed with Alzheimer's and is in his 3rd year of this disease. It took 18 month for him to get diagnosis. On a better note, he is on mess to slow it down and they help


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[chick1962]

Meds sorry


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