memory test

[kazb]

Hi kind helpful people.
So i was a nurse and got diagnosed 2year with altzheimers,had a PET scan and said i had dementia.
Work finished me , i have now learned to try and live with it.
Hubby left me and son came to live with me and sold his house.
I have yearly memory tests, had appointment last week. Received letter today to say i performed better in this test compared to when last seen.
On most of these test as she wanted a answer i just guessed.
The consultant said it would be helpful to repeat the brain scan.

Do you think this is normal as i always thought it got worse not better. ??
Do you think i may have been misdiagnosed ??
What is he expecting the scan to show ??,is it normal to have another scan.
Sorry for so many questions, but my life nearly ended with this diagnoses and i have lost my career,hubby and much more.

 

[nitram]

You don't say if the improvement on the memory test was marginal, it could be within expected error meaning 'no real change'.

You said the >>>PET Scan<<< was positive for dementia.
This indicates that you have dementia, it does not exclude other problems, vitamin B12, electrolytes, thyroid,...

The further scan could be to look for changes using the first scan as datum, or it could be a different type of scan to look for any other problems.

Never mind any test results, how do you feel you are coping compared with 6 months or a year ago?

You can't escape the fact that all dementias are progressive, the rates and paths of progression vary enormously, all you can do is take things a day at a time.

Best thing is to talk to GP, who should have received a report from the consultant, or the consultant directly.

 

[kazb]

thankyou

You don't say if the improvement on the memory test was marginal, it could be within expected error meaning 'no real change'.

You said the >>>PET Scan<<< was positive for dementia.
This indicates that you have dementia, it does not exclude other problems, vitamin B12, electrolytes, thyroid,...

The further scan could be to look for changes using the first scan as datum, or it could be a different type of scan to look for any other problems.

Never mind any test results, how do you feel you are coping compared with 6 months or a year ago?

You can't escape the fact that all dementias are progressive, the rates and paths of progression vary enormously, all you can do is take things a day at a time.

Best thing is to talk to GP, who should have received a report from the consultant, or the consultant directly.

Nitram,
thank you for your kind reply,

I dont know if the memory test was marginal, as just got a letter saying it was better than last time tested (1 yr ago).
Its going to be another PET scan his secratary said.
I feel ok, but that things are a little more muddled and harder. i dont go out or have friends anymore. I used to be a nurse and lost my job, career, licence and husband when i got the diagnosis.
I phoned my GP and he siad he got the same letter as me, just saying he wanted another PET scan because i had done better on the memory test than last time.
His secratary said she would ask him to call me, but last time i ask him to he took 3 months and it was a letter.
My world was turned upside down wit the diagnosis as you can imagine and as i am sure you are aware i lost everything. My job as a nurse(career),husband and house as i now had no income other than ESA. my son left his house and come and looked after me and still does, lost my licence and all my friends//.
I dont no how to deal with all this as cannot cope with change easy.
on the memory test i said i dint no the answers and she said guess, so i did. i must have done well.....
God i cannot cope with not knowing what and why???, he is so awful for not getting back to me.
Thanks for the kind reply, as you said maybe hes just comparing the scans .

 

[nitram]

Thanks for your PM (private message).

You really have to wait for the result of the new PETSCAN, as you probably know these cost the NHS far more than a more normal CATSCAN, your consultant must think it's worth it, you have to trust him.

You could contact >>>admiral nurses<<< for help.

They have a helpline, also in the left hand pane, you can see if they have a presence in your locality.

 

[kazb]

Update had meeting with consultant

I had a requested meeting today with my consultant to find out why he is getting me to have another MRI scan.
He said because i did a little better on the memory test last week,than a year ago. I did explain that i just guessed may of them as the tester said if i didnt no then just try and find the correct one, so i did as asked.
He said this is just one reason he is doing another MRI scan.
He showed me and my son the previouse MRI and PET scan, whom had been checked with another professor for my diagnosis of altzheimers.
These showed The right side of Hippo campus was much smaller and is where i have the problem.
So i asked why if they had both checked and given me this diagnosis, they were now unsure.
He said he wouldnt answer till he had the results,but this is going to be in 5-6 weeks as he is going on holiday, so i am left in limbo.
i asked if it isnt altzheimers what could it be, he said depression or heart disease, i have neither of these, so dont understand.
Does anybody know of anyone who has been misdiagnosed ??.
I have tried all the nurses and everyone for help, but everyone says wait for the results.

 

[Spamar]

OH,s test scores went up cos he remembered (?) the format. Both I and friends in the same position have driven to the clinic being asked what day is it today, who is the prime minister etc. No surprise from the consultant! OH wasn't re-scanned, and by that time he was a minimum of 4 years into the disease.
Yes, PET scans are expensive, about £3,000 I think. OH never had one, none in local hospital, CAT scans only.

 

[kazb]

advice

Can anyone give any help or advice please

 

[kazb]

had MRI

just a update, had MRI a few weeks ago and now waiting for it to be reported on and my consultant to come back from his 3 weeks holidays to see what the results are.
Do i have dementia or not.
I really dont think they understand the stress of waiting 3 weeks is causing,

 

[stanleypj]

I'm sure everyone who has read your thread will understand how difficult this is for you. It's always a worry waiting for test results when they take a normal amount of time. I'm so sorry that you have to wait three weeks. It's great to hear that your son has stood by you though.

 

[kazb]

Had results of MRI and consultant said no changes on it from my first MRI scan 2 years ago, she he doubts now i have Alzheimer. so he siad hes going to ask for funding to have a Pet scan, if not he wants me to have a lumber puncture.
OMG i am so confused what do i do. and if its not Alzheimer then what do i have.
HELP

 

[karaokePete]

I would advise that you don't panic as that will only make things worse. My wife is also awaiting a PET scan. Only vascular changes were noted on her CT and MRI scans but her diagnosis was made on the basis of these scans along with overall behaviour and memory/cognitive etc testing. Blood screening was also undertaken to rule out alternative causes.
I hope that your scan goes ahead and if the decision is that you don't have a dementia that the cause of any symptoms can be identified and treated - which would be a good thing. I presume you have had blood tests etc to check for other causes of your problems.

 

[creativesarah]

Bless you Kazb ( i kept having to scroll up and down to remember your name!)
I will pm you
Sarah

 

[Clare bear]

Hi kind helpful people.
So i was a nurse and got diagnosed 2year with altzheimers,had a PET scan and said i had dementia.
Work finished me , i have now learned to try and live with it.
Hubby left me and son came to live with me and sold his house.
I have yearly memory tests, had appointment last week. Received letter today to say i performed better in this test compared to when last seen.
On most of these test as she wanted a answer i just guessed.
The consultant said it would be helpful to repeat the brain scan.

Do you think this is normal as i always thought it got worse not better. ??
Do you think i may have been misdiagnosed ??
What is he expecting the scan to show ??,is it normal to have another scan.
Sorry for so many questions, but my life nearly ended with this diagnoses and i have lost my career,hubby and much more.

Hi, I have early onset alzheimers and my husband has just jumped ship, I feel your hurt and pain. I have started on medication about 5 months ago called donepezil and it has transformed my way, it's helped so much and I have definitely improved, my memory for names and my language skills feel so much clearer and assessable. So maybe it's not so unusual? Xxx

 

[kazb]

so had the PET scan last week and awaiting the results.

 

[PJ]

so had the PET scan last week and awaiting the results.

Hi just read your posts & wondered if you’ve had PET results yet? I’m awaiting dare for SPECT scan (never heard of it before?).

 

[Norrms]

Hiya, as a person living with this awful disease for nine years now i can say hand on heart i have no faith in the memory test and please take no notice of results, a friend of mine scored full marks, walked outside, sat in the car and his wife asked him where he had just been?
His answer ??
No idea !!!

hope this helps xxxxxxxxxxxxxx

 

[NotTooLate]

Hello Kaz. I hope you having a good day. I know I am not me, as I was. I am aware that something is eating away at me. I did not need the test to tell me. It is so hard to accept it and I will fight it all the way. You said, i have now learned to try and live with it and this show me a strong person and someone ready to go forward. It made me feel positive. I now how it is to be alone and I am sure many here do to, but I feel a bit closer to those who understand what we are going through, by being here. I'm thinking of you. x

 

[kazb]

Update
I seen the consultant on friday and he said i dont have alzheimers but Functional Neurological disorder. Tried to research this and not much information on memory loss to be honest. Yes its a great relief but for over 4 years i have been told i have altzheimers and taken medication, lost my nursing career and husband etc. but nothing has changed for me other than the name and outcome, i still have memory loss, but now with no consultant or help. he just said i now need to see GP as there is nothing he can do. My son who came home to live with me when hubby left me,now is making plans to move in with his girlfriend now he said i dont have alzheimers i dont need him, i do and tried to tell him. he looked up FND and said i dont.

 

[Tricot]

This outcome must have left you reeling. Have you seen this website:

http://www.fndaction.org.uk/

It does mention memory loss as a possible symptom, but there are lots of possible symptoms, many of them physical.

Someone else asked about your blood test results. Do you have copies of them? You're legally entitled to them. Sometimes people are just told their results are OK and not given a copy. Insufficient B6, B9 and B12 can cause significant memory and neuro problems.

 

[Agzy]

Hi, I have early onset alzheimers and my husband has just jumped ship, I feel your hurt and pain. I have started on medication about 5 months ago called donepezil and it has transformed my way, it's helped so much and I have definitely improved, my memory for names and my language skills feel so much clearer and assessable. So maybe it's not so unusual? Xxx

Clare bear, my OH was diagnosed with Alzheimer’s over 2 years ago after usual tests and had them as it was obvious to me she had some form of brain disorder. Like you she was put on Doneprizle and, like you it has transformed her and for me rolled back two years in so many ways. Her last memory test showed a reduced score by one point which is no change. So lucky to have this drug to slow things down but for God knows how much time it will grant us. Good luck to you and all so afflicted.