Visit to the neuropsychologist next on the list....

[LynneMcV]

My husband received a letter today (Saturday) to say he has an appointment with a trainee neurophychologist on Monday (I can only assume it got lost in the post as it hasn't left much time for us to make arrangements!)
Does anyone know if this is the point where a final diagnosis gets given, or are there generally a whole load of more tests to come?
To date he has had one set of memory tests and an MRI scan which showed 'mild atrophy of the brain'- but the doctor said it was only mild and she couldn't completely rule out that it wasn't a normal level of shrinkage expected in a 58 year old. She put him on Aricept on the basis that she didn't want to wait 6mths to see if things got worse before prescribing medication.
She did say that his memory tests were 'not terrible' but did show worrying blanks in his memory (particularly with personal history), which she would expect to find in an 80 year old, but not a 58 year old.
I read somewhere that neuropsychologists also do the same sort of memory tests that hubby has already done. I've also heard that this is so the results can be compared to previous tests - either to back up what was found before - or show any improvement since he has been using Aricept (which in itself is confusing because as for as I know, Aricept merely slows down the progression of dementia and therefore improvement is not expected )
I (and hubby) are somewhat confused by the whole situation. The word Alzheimer's has not been used yet - just the words 'early onset dementia' (and I am not even sure if that is an official diagnosis, as opposed to them 'hedging their bets' because they think it is the best thing to go with for now until more conclusive tests have been done).
The appointment letter says hubby can bring someone along for the interview (though obviously not for the tests themselves) as this will help them get a picture of what my husband is like and in what ways he might have changed, and any possible causes.
There is a space on the back of the leaflet for about 6 questions - but to be honest I have a lot more than that rattling around in my head!
I don't want to take over the appointment asking all the questions - but equally my husband is a quiet man and the sort that doesn't generally ask doctors or medical professionals questions himself. Maybe he doesn't want to know the answers, so I feel worried that I might cause him pointless worry by being too direct with my questions at the interview.
Maybe at some point down the line I will get a chance to talk privately with one of the experts, I have no clue how this all works!
Sorry to rattle on - just needed a sounding board!

[mollymalone]

My husband received a letter today (Saturday) to say he has an appointment with a trainee neurophychologist on Monday (I can only assume it got lost in the post as it hasn't left much time for us to make arrangements!)
Does anyone know if this is the point where a final diagnosis gets given, or are there generally a whole load of more tests to come?
To date he has had one set of memory tests and an MRI scan which showed 'mild atrophy of the brain'- but the doctor said it was only mild and she couldn't completely rule out that it wasn't a normal level of shrinkage expected in a 58 year old. She put him on Aricept on the basis that she didn't want to wait 6mths to see if things got worse before prescribing medication.
She did say that his memory tests were 'not terrible' but did show worrying blanks in his memory (particularly with personal history), which she would expect to find in an 80 year old, but not a 58 year old.
I read somewhere that neuropsychologists also do the same sort of memory tests that hubby has already done. I've also heard that this is so the results can be compared to previous tests - either to back up what was found before - or show any improvement since he has been using Aricept (which in itself is confusing because as for as I know, Aricept merely slows down the progression of dementia and therefore improvement is not expected )
I (and hubby) are somewhat confused by the whole situation. The word Alzheimer's has not been used yet - just the words 'early onset dementia' (and I am not even sure if that is an official diagnosis, as opposed to them 'hedging their bets' because they think it is the best thing to go with for now until more conclusive tests have been done).
The appointment letter says hubby can bring someone along for the interview (though obviously not for the tests themselves) as this will help them get a picture of what my husband is like and in what ways he might have changed, and any possible causes.
There is a space on the back of the leaflet for about 6 questions - but to be honest I have a lot more than that rattling around in my head!
I don't want to take over the appointment asking all the questions - but equally my husband is a quiet man and the sort that doesn't generally ask doctors or medical professionals questions himself. Maybe he doesn't want to know the answers, so I feel worried that I might cause him pointless worry by being too direct with my questions at the interview.
Maybe at some point down the line I will get a chance to talk privately with one of the experts, I have no clue how this all works!
Sorry to rattle on - just needed a sounding board!

Hi Lynne
Two things. You can ask to speak to someone privately - perhaps while your husband is undergoing tests. Maybe I was lucky but my request was granted and it was a great relief. The other thing is, I was always reluctant to talk frankly about my husband's problems in front of him but I now realise he's forgotten what's been said within ten minutes, so I go right ahead and ask those questions. Better out than in.
Good luck!

[mockingbird59]

Hi Lynne
I've sent you a private message - too long for this space!
It is short notice, but then nothing surprises me these days - some areas are better than others.
Best wishes, Alison

[zeeeb]

Feel free to add as much in writing as you feel is useful for the neuropsych. If it doesn't help him, it might help you to write it all out, keep a copy for his GP and any other people medically that might benefit seeing it.

My mum got a diagnosis at 57. After about a year of testing and mucking around. It went kind of like this

panic attacks - seemingly unprompted - really out of character
wait about a year or 2 ignoring it

accident at work (hurt her finger, sent her into a massive spiral of depression)

returned to work, depressed, not quite right and then soon after, told that she needed to "sort out her memory problems and was put off work until she sorted it out". She is a nurse, so needed to be able to do medications etc.

anti-depressants
psychologist appointments
gp thought she might have parkinsons, so sent her to a geriatric specialist
CT Scan
wait
MRI Scan (geriatric specialist was pretty sure it may be alzheimers, but wanted more because she was so young)
wait
Spec Scan and nueropscyh appointment
diagnosis

she was put on some patches, they gave her rashes
she was put on aricept, and we're just treading water now waiting for the next bomb to hit

[SnowLeopard17]

Dear Lynne

Firstly very so sorry to hear about your husband, my husband was diagnosed with Alzheimers about a year ago at a similar age - i wish the very best for both of you.

I agree with the comment above, write stuff down before you go including any questions you have. If you get a chance hand this to the receptionist and ask her to give this to the consultant before you go in - this will give him/her the opportunity to read just prior to the appointment. If you get the opportuinity can you ring in the morning and advise them that you would like to do this - you could also ask what will be involved?

Our journey to diagnosis was very different to yours, my husband was in denial and to this day i have not been able to talk openly in front of the professionals or even friends.

Neither of us was prepared for our visit to the neurologist. Shame on me i should have done my homework. As a consequence it was very stressful for both of us and my husband has refused to see him since. You and your husband will be more prepared and that is good.

As well as asking family history etc the neurologist performed various cognitive tests including the MMSE, the Montreal Cognitive Assessment and the clock drawing test. I was present for these.

He asked to speak to me separately. I should have known my husband better and declined. It was not good to usher my husband out of the room and it stressed him enormously. With aforethought this process could have been handled far better by the professionals - and we had gone privately!!

This did however give me the opportunity to discuss various issues/problems etc which my husband would not have approved but it did provide additional and maybe confirmatory information to the neurologist.

The neurologist referred my husband for a SPECT scan to check brain functioning- my husband refused.

He did however have the SPECT scan a few months later following a referral from a psychiatric consultant. This confirmed the diagnosis of early onset dementia of the alzheimers type.

I hope this helps. Being prepared as much as you can be leads to a less stressful experience and i wish you both all the best.

with love SnowLeopard x

[LynneMcV]

Thank you everyone for taking time to respond to my post both here and in private. It really has been a big help and thanks to your input I will now be a lot more prepared for the appointment tomorrow - and that can only be a good thing.
I really do appreciate the help you've given.

Best wishes,

Lynne