I might have frontotemporal dementia, but I might have something else

[WJG]

I'm in the unusual position of seemingly being the only person who thinks I have frontotemporal dementia - whereas other people seem (at this stage) to think I have depression, or other psychiatric difficulties. So I'm keen to try and work out what the real problem is.

I know that people with FTD are generally unaware of their difficulties, whereas I know that my personality has changed. I have gone from being a lively extrovert person to someone who wants to hide from the world, who suffers a lot from apathy and who seems to have lost both my sense of empathy and my sense of humour.

I have had a CT scan that shows 'a degree of atrophy' to my frontal lobes. I have had cognitive tests that show no detriment. I am on a waiting list for a SPECT scan (tests have been arranged by a consultant psychiatrist).

For my part, I'm not sure how I can adequately explain why I think I have bvFTD other than by saying I don't feel I have any control over my feelings of Anhedonia etc.. And I'm convinced that talking therapies such as CBD would now mean nothing to me. I also have a sense of things slowly but steadily getting worse.

But people point out that:1. I am aware of changes to me 2. I don't have obsessive behaviours 3. I don't have problems with behaviours that transcend social norms 4.I show no signs at all of cognitive impairment. So, it is suggested, the problem is probably one of Depression and/or other psychiatric difficulties.

Can anyone suggest please what any useful next steps might be for me to try and sort out what's going on? Is there anywhere that I could refer myself to?

 

[canary]

Hi @WJG

Well someone is taking this seriously because you have been booked in for a SPECscan. This scan is a very good one for suspected FTD as it is more likely to show any damage. Have you also had in depth neuropsychology testing? These tests should take at least 2 hours to do, sometimes 4 hours. If you have only had the very basic tests these may not show anything as the ones most commonly used are designed to pick up Alzheimers.

Depression can indeed mimic the symptoms of dementia, but if you have FTD, it should show up problems but, TBH, the greatest test is time. If it is FTD you will get new additional problems and, eventually it will become obvious.

Just a little reminder. Whether you have FTD or not, perhaps it would be a good thing to sort out POA and your will, just in case. Then you can file them away until needed, which hopefully will be a long time ahead.

 

[WJG]

Hi @WJG

Well someone is taking this seriously because you have been booked in for a SPECscan. This scan is a very good one for suspected FTD as it is more likely to show any damage. Have you also had in depth neuropsychology testing? These tests should take at least 2 hours to do, sometimes 4 hours. If you have only had the very basic tests these may not show anything as the ones most commonly used are designed to pick up Alzheimers.

Depression can indeed mimic the symptoms of dementia, but if you have FTD, it should show up problems but, TBH, the greatest test is time. If it is FTD you will get new additional problems and, eventually it will become obvious.

Just a little reminder. Whether you have FTD or not, perhaps it would be a good thing to sort out POA and your will, just in case. Then you can file them away until needed, which hopefully will be a long time ahead.

The MH services in Scotland have been excellent in listening to me, and taking my concerns seriously. I'm full of praise for them.
I do have Power of Attirney arranged - but not a will. Thankyou for that reminder. I am keen to do further neuropsychology testing but I'm not clear how this would be arranged - is this something I can request....if so, from who?

 

[lemonbalm]

Are you having any treatment or medication for depression in the meantime, to see if that helps, @WJG ?

 

[canary]

Usually neuropsychology testing is requested by a neurologist, but your psychiatrist may be able to request it too. Whoever requests it should request testing that concentrates on the frontal lobes - especially language and executive function.

Have you seen a neurologist who specialises in FTD?

 

[WJG]

Usually neuropsychology testing is requested by a neurologist, but your psychiatrist may be able to request it too. Whoever requests it should request testing that concentrates on the frontal lobes - especially language and executive function.

Have you seen a neurologist who specialises in FTD?

No - the thinking seems to at present to wait for the SPECT results and see what they say before looking at further testing.

 

[Grannie G]

Hello @WJG

I am keen to do further neuropsychology testing but I'm not clear how this would be arranged - is this something I can request....if so, from who?

It may be a big ask but perhaps try to take one test at a time. IT sounds as if much is being done to get a diagnosis for you. The SPECT scan may give the answer.

It may help to know my husband was treated for depression for more than a year before his diagnosis of Alzheimer`s. It seems depression is treated until the medics are certain there is more than depression as a cause of concern.

 

[WJG]

Are you having any treatment or medication for depression in the meantime, to see if that helps, @WJG ?

I'm full of antidepressants. Do they change anything? No. Have I tried every antidepressant known to man? Certainly feels like it!

 

[canary]

the thinking seems to at present to wait for the SPECT results and see what they say before looking at further testing.

This seems perfectly reasonable to me.

 

[Countryboy]

I'm in the unusual position of seemingly being the only person who thinks I have frontotemporal dementia - whereas other people seem (at this stage) to think I have depression, or other psychiatric difficulties. So I'm keen to try and work out what the real problem is.

I know that people with FTD are generally unaware of their difficulties, whereas I know that my personality has changed. I have gone from being a lively extrovert person to someone who wants to hide from the world, who suffers a lot from apathy and who seems to have lost both my sense of empathy and my sense of humour.

I have had a CT scan that shows 'a degree of atrophy' to my frontal lobes. I have had cognitive tests that show no detriment. I am on a waiting list for a SPECT scan (tests have been arranged by a consultant psychiatrist).

For my part, I'm not sure how I can adequately explain why I think I have bvFTD other than by saying I don't feel I have any control over my feelings of Anhedonia etc.. And I'm convinced that talking therapies such as CBD would now mean nothing to me. I also have a sense of things slowly but steadily getting worse.

But people point out that:1. I am aware of changes to me 2. I don't have obsessive behaviours 3. I don't have problems with behaviours that transcend social norms 4.I show no signs at all of cognitive impairment. So, it is suggested, the problem is probably one of Depression and/or other psychiatric difficulties.

Can anyone suggest please what any useful next steps might be for me to try and sort out what's going on? Is there anywhere that I could refer myself to?

WJG you haven’t told us your age
I was first diagnosed with Alzheimer’s in 1999 and after a PET brain scan in 2003 then a SPEC scan 2004 was confirmed FTD I continued working for 8 years until my retirement age 65 I’m now 78 and continued to drive and still driving today still ride a 1000cc motorcycle when the weather fine although I have loads of support from OT’S Doctors ect and of course my wife family I always remained in Control the Finial Decisions were always my decisions
WJG be very wary of bureaucrats and the doom gloom brigade who are far worse now than 20 years ago so just remember its your life your future so advice your given think about any decision you make now because it could affect your future

(WJG Stay in control )

 

[WJG]

WJG you haven’t told us your age
I was first diagnosed with Alzheimer’s in 1999 and after a PET brain scan in 2003 then a SPEC scan 2004 was confirmed FTD I continued working for 8 years until my retirement age 65 I’m now 78 and continued to drive and still driving today still ride a 1000cc motorcycle when the weather fine although I have loads of support from OT’S Doctors ect and of course my wife family I always remained in Control the Finial Decisions were always my decisions
WJG be very wary of bureaucrats and the doom gloom brigade who are far worse now than 20 years ago so just remember its your life your future so advice your given think about any decision you make now because it could affect your future

(WJG Stay in control )

I am 67

 

[WJG]

Are you having any treatment or medication for depression in the meantime, to see if that helps, @WJG ?

I am on antidepressants, that seem to have little effect

 

[WJG]

I'm not clear about whether someone with FTD can know of changes to themselves. Everything I've read says that this is unlikely - but does that mean that it's impossible? I'm also unclear as to whether or not it's possible to have atrophy to the frontal lobes (as I have) WITHOUT this bring dementia.
I'm grateful for any thoughts on this. Thankyou.

 

[canary]

Hi @WJG
Most people with any sort of dementia are unaware of the changes in themselves, but not all of them. You have already met countryboy who has FTD and is very aware that this is what he has. There are other members on here who are aware of their changes, although they may not post very often.

I think the atrophy in the frontal lobes is what is being investigated

 

[WJG]

I have today had details of the CT scan:
'There is moderate generalised cortical atrophy a little more marked over the frontal lobes. No focal intracranial abnormality nor space-occupying lesion. Normal size ventricles'
'Opinion: Moderate generalised frontal predominant atrophy'

Not too sure quite what this tells me - sort of everything and nothing.
Seems that CT Scans are a little like blurry satellite photos - whereas SPECT scans are Google Maps Street Level. Complete with details of cul-de-sacs, one way streets, and Information SuperHighways.

 

[Countryboy]

I'm not clear about whether someone with FTD can know of changes to themselves. Everything I've read says that this is unlikely - but does that mean that it's impossible? I'm also unclear as to whether or not it's possible to have atrophy to the frontal lobes (as I have) WITHOUT this bring dementia.
I'm grateful for any thoughts on this. Thankyou.

WJG possibly 100 years ago maybe not but since year 2000 onwards what with the media and TV presenters and all the Dementia related organizations telling everyone the signs to look out for how, on earth wouldn’t a person realized they had a problem ? so my answer to you WJG unless a person can’t read or doesn't own a Television set they just can’t avoid the information on dementia its everywhere the minute you enter a GP surgery its there on the wall plus majority would possibly had a parent with dementia

yes a Person with dementia Knows the big but is do they want to accept it

NHS advise Common early symptoms of dementia
Different types of dementia can affect people differently, and everyone will experience symptoms in their own way.
However, there are some common early symptoms that may appear some time before a diagnosis of dementia. These include:

• memory loss
• difficulty concentrating
• finding it hard to carry out familiar daily tasks, such as getting confused over the correct change when shopping
• struggling to follow a conversation or find the right word
• being confused about time and place
• mood changes

the Information is everywhere

 

[canary]

Seems that CT Scans are a little like blurry satellite photos - whereas SPECT scans are Google Maps Street Level. Complete with details of cul-de-sacs, one way streets, and Information SuperHighways.

LOL! Thats a very good way of describing it!