Whats the possibility its not dementa

[thesilentpoet]

HI,

Looking for some advice...my partner has had a scan which shows frontal brain shrinkage...her psychological assessment shows that there is supporting evidence of deterioration, particularly around her processing and social skills, though her memory is pretty ok at present...because of this the psychologist has suggested the likelihood of fronto-temporal dementia and in a private conversation with me told me that if the blood tests are normal (which they were), that i need to accept that is unlikely to be anything else...however when speaking to her neurological consultant with my partner present, the consultant said she doesnt meet all the diagnostic criteria at the moment, though he does think it is a degenerative condition...all that is left is have a periodic psychological assessment and see if the deterioration continues...

the question i have, is whether there are any rare, 1 in a million type illnesses i need to be aware of as possibilities, and to ensure the consultant is checking for this as well...i know the blood tests did look at things like HIV and lyme's disease but just want to make sure im covering all possibilities...

the other question i have is whether anybody's diagnosis has ever changed from fronto-temporal dementia to korsakoff syndrome? my partners family are wondering whether she has korsakoff even though the psychologist said it was unlikely...she did have a problem with alcohol to the extent that most weeks for a 2yr period she would drink the recommended weekly limit...however she was never an alcoholic who drink bottles of vodka a day...my only concern is that if it was korsakoff, then she should be getting stable since she stopped drinking over 6mths ago...any thoughts?

 

[canary]

Hi @thesilentpoet

The diagnosis of FTD has fairly strict criteria, although most doctors do not mention this. At the stage you are at it would be considered "possible FTD". To be considered "probable FTD" you have to show definite deterioration in both scans and neuropsychology testing. You cant definitively diagnose FTD before death (unless there is a documented genetic reason, which is unlikely), only on a post mortem, which is very rarely done.

TBH, to say the "possible FTD" is not FTD is, IMO, rather nit-picking. It is unlikely to be anything else.

 

[northumbrian_k]

I am not sure of your motivation in looking for some other potential cause @thesilentpoet I don't know anything about FTD. However what @canary has said seems to back up what you have been told and explains why it is described as "possible". This means "likely but not certain" rather than "possibly something else". Where the idea of Korsakoff's comes from I don't know but, unless medical evidence and opinion says otherwise, I would put it to one side. I would suggest acceptance of FTD as a strong likelihood. This will allow you to work out how best you can support your partner going forward. I hope that this helps.

 

[thesilentpoet]

I am not sure of your motivation in looking for some other potential cause @thesilentpoet I don't know anything about FTD. What @canary has said seems to back up what you have been told and explains why it is described as "possible". This means "likely but not certain" rather than "possibly something else". Where the idea of Korsakoff's comes from I don't know but, unless medical evidence and opinion says otherwise, I would put it to one side. I would suggest acceptance of FTD as a strong likelihood. This will allow you to work out how best you can support your partner going forward. I hope that this helps.

tbh I have accepted it as the likely the outcome...I am asking to make sure as her family are hoping it might be korsakoff as if you stop drinking, then korsakoff dementia may not deteriorate as opposed to other dementia types....I don't think it is korsakoff because her symptoms are different, and the drinking was never that bad...

 

[jugglingmum]

I think a significant minority of women drink more than the recommended limit on a weekly basis as after all 14 units is one large G & T after putting the kids to bed as an example. This is no where near alcoholism but at the level where you start increasing risks of many diseases.

As your own opinion suggests the drinking was never that bad. It sounds like her family are desperately clutching at straws as they want her to recover and are possibly part of the minority that rarely drink.

 

[thesilentpoet]

I think a significant minority of women drink more than the recommended limit on a weekly basis as after all 14 units is one large G & T after putting the kids to bed as an example. This is no where near alcoholism but at the level where you start increasing risks of many diseases.

As your own opinion suggests the drinking was never that bad. It sounds like her family are desperately clutching at straws as they want her to recover and are possibly part of the minority that rarely drink.

yep you may be right...tbh it was me that rarely drank...her step mum was her drinking buddy out family gatherings...God it would be less stressful if diagnosis was easier ?

 

[Lawson58]

Getting a diagnosis is not always easy and while it may be easier to get assistance of various sorts if there is one, sometimes it doesn’t really solve some of the problems.

My husband was diagnosed with atypical Alzheimer’s in 2014 but that went through different labels such as fronto variant, non amnesiac Alzheimer’s then as non classical. This was because his behaviour never fitted any of the usual descriptions of the disease. Last year, after a dreadful few months when I could have cheerfully left him, when he wouldn’t talk to me or even acknowledge my existence, he had a complete change and to some extent showed much of the person I had married. We have not had an argument since.

His consultant ordered a PET scan to see what was going on and when this came up perfectly clean, the diagnosis of Alzheimer’s was withdrawn and so he is now, all these years later, non diagnosed.

So for me, the question remains as to his condition. Does he have Alzheimer’s? Probably not as he has always been distinctly different in many ways to just about everybody with the disease. Does he have dementia? Probably. All the testing at the memory clinic three years apart indicated that, there are cognitive deficits which had worsened significantly over a period of years.

Sometimes, you get don’t get the answers you are looking for and sometimes you need to take a deep breath, take one step back and don’t panic. It doesn’t sound as if your partner is going downhill very quickly so it may take time for you to get a result. I will say that from my own personal experience, I think that there is still a long way to go before they really know what they are doing when a patient doesn’t conform to the usual symptoms of most forms of dementia.

 

[canary]

Yes, @Lawson58 , I have thought for some time that your OH and mine are very similar.
I think the big difference between you and and I, and @thesilentpoet is that in your and my case the scans are clear, but in her case the scans already show frontal lobe shrinkage.

 

[Lawson58]

Yes, @Lawson58 , I have thought for some time that your OH and mine are very similar.
I think the big difference between you and and I, and @thesilentpoet is that in your and my case the scans are clear, but in her case the scans already show frontal lobe shrinkage.

Yes, of course but it would be interesting to know why silent poet’s partner didn’t meet all the criteria for a diagnosis.

The first scans OH had were done a few months after his cardiac arrest. The consultant at the time thought there was something on the MRI and that with all the other evidence was the thing why he made that decision. Seven years later with the clear PET scan, he wrote a report saying that evidence found on the original MRI was something to do with the cardiac arrest.

Very confusing and totally bizarre.

 

[canary]

Yes, of course but it would be interesting to know why silent poet’s partner didn’t meet all the criteria for a diagnosis

Its because they havent yet got clear signs of progression.

 

[thesilentpoet]

thanks @Lawson58 and @canary ... so the scan shows frontal lobe shrinkage...her psychological assessment results show that the areas where her answers are weaker point more towards to FTD but they havent ruled out frontal alzheimers...like you say, no clear signs of progression till they do the next assessment, even though i think i can see progression from 9mths ago