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Self Diagnosis

WJG

Registered User
Sep 13, 2020
34
For some time I've believed that difficulties I'm facing (apathy, lack of empathy, loss of humour, emotional flat-effect) are due to some form of neurological issue. This view was dismissed by psychiatrists in another part of the country , as I was told that if I had dementia I would by definition not score well on cognitive tests. So no further tests were done.

I have now moved, and as a result of renewed discussion with a different Mental Health Team have had a CT scan. As I detail in another post, this has led to me being forwards for a SPECT scan. I continue to sail through cognitive tests, although I feel that I am struggling a bit more with some intellectual tasks than I once did.

I now have in writing the results of the CT scan from the Consultant Radiologist: 'Opinion: Moderate generalised frontal predominant cortical atrophy'

I am being urged not to jump to the conclusion that this (together with my symptoms)means I have early frontotemporal dementia. But anything I read online - only from reputable sources - suggests to me that this is probably the case. Which scares me, to be frank.

Am I catastrophising, or just putting 2 and 2 together to make 4?
 

canary

Registered User
Feb 25, 2014
13,689
South coast
Hi @WJG

Am I catastrophising, or just putting 2 and 2 together to make 4?
I know that you want answers, and in your position I would want them too, but honestly, this is not a question we can answer. Obviously FTD is a possibility, but I cant answer more than that - you need the neurologists report.
I was told that if I had dementia I would by definition not score well on cognitive tests.
That psychiatrist doesnt know much about dementia. Being able to sail through the cognitive tests, doesnt mean a lot if FTD is suspected, because most of the cognitive tests are designed to pick up Alzheimers. They will also work on other types of dementia, but not usually on FTD (at least in the early stages) as people with FTD usually do not get short-term memory loss and loss of awareness of time/place as their first symptoms, like people with Alzheimers do.
There again, if you havent got FTD, this would also explain why you can sail through them!
 

Dunroamin

Registered User
May 5, 2019
44
You cannot self diagnose. You may have suspicions, as indeed I did. And not everyone with Alzheimer's presents with loss of awareness of time/place as first symptoms as you state in your post. We are all individuals and presentation varies, particularly with an early diagnosis.

I would advise you wait for the full neuro report as suggested upthread.
 

Dunroamin

Registered User
May 5, 2019
44
You cannot self diagnose. You may have suspicions, as indeed I did. And not everyone with Alzheimer's presents with loss of awareness of time/place as first symptoms as you state in your post. We are all individuals and presentation varies, particularly with an early diagnosis.

I would advise you wait for the full neuro report as suggested upthread.
 

Weasell

Registered User
Oct 21, 2019
690
I think it may not be straightforward to diagnose.
But you have followed your instincts something is wrong, well done.

You may not receive the 100 per cent diagnoses you require even from the experts. But you
have brought your time to plan for eventual outcomes.

In time if the symptoms continue you will have the chance to compare old and new scans!

Wishing you Well!
 

Dunroamin

Registered User
May 5, 2019
44
Hi @Palerider sorry to be pedantic, but my (admittedly fuddled these days) brain can still acknowledge a difference between self identification of symptoms and an actual diagnosis. I stand by my statement that we cannot self diagnose. As an ex-health professional with a sound background knowledge of the CNS I went to see my GP with a list of concerns. She was not convinced, but referred me to the memory service. A full assessment and neurological examination plus scans then confirmed my suspicions and a diagnosis only then was made after a full case discussion by the assessment team

@WJG follow your instincts and pursue what is right for you. I wish you resolution and am prescribing you a large dose of patience (something you will need dealing with multi disciplinary teams!)
 

WJG

Registered User
Sep 13, 2020
34
Hi @Palerider sorry to be pedantic, but my (admittedly fuddled these days) brain can still acknowledge a difference between self identification of symptoms and an actual diagnosis. I stand by my statement that we cannot self diagnose. As an ex-health professional with a sound background knowledge of the CNS I went to see my GP with a list of concerns. She was not convinced, but referred me to the memory service. A full assessment and neurological examination plus scans then confirmed my suspicions and a diagnosis only then was made after a full case discussion by the assessment team

@WJG follow your instincts and pursue what is right for you. I wish you resolution and am prescribing you a large dose of patience (something you will need dealing with multi disciplinary teams!)
I admit that I am finding it hard to be a patient patient. As far as I can see my symptoms plus the CT scan results can only realistically lead to one conclusion - but I fully accept that I am a lay person, and it's possible something else is going on that I don't understand. I guess that my faith in The System has been shaken by the refusal by several psychiatrists I have seen in the past to even contemplate the possibility that I may know more about my condition than they did. I can now objectively demonstrate that something neurological is amiss, even if it hasn't yet had a label attached.
Ps what does CNS stand for, please?
 

WJG

Registered User
Sep 13, 2020
34
This is an aside, but can anyone point me to evidence about how long the gestation period for different dementias might be, before they start to show up as major issues? Are we talking weeks, months, years or decades? And are there very early warning signs that would in the course of things just get dismissed as part of someone's character?
 

Palerider

Registered User
Aug 9, 2015
2,017
North West
Hi @Palerider sorry to be pedantic, but my (admittedly fuddled these days) brain can still acknowledge a difference between self identification of symptoms and an actual diagnosis. I stand by my statement that we cannot self diagnose. As an ex-health professional with a sound background knowledge of the CNS I went to see my GP with a list of concerns. She was not convinced, but referred me to the memory service. A full assessment and neurological examination plus scans then confirmed my suspicions and a diagnosis only then was made after a full case discussion by the assessment team
Its ok, there is always someone to throw a panner in the works and diagnosis is split into different parts of the diagnostic journey. I think knowing too much can make self-diagnosis difficult as well as knowing only a little. But diagnosis is not the end result, it is how the end result is achieved - the identification of the nature of an illness or other problem by examination of the symptoms . Admittedly with the advent of Google people wrongly diagnose, but it is possible to self diagnose accurately evidenced by many journals. ;)
 

Chihuaha

New member
Oct 21, 2020
9
This is an aside, but can anyone point me to evidence about how long the gestation period for different dementias might be, before they start to show up as major issues? Are we talking weeks, months, years or decades? And are there very early warning signs that would in the course of things just get dismissed as part of someone's character?
I
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,967
Kent
This is an aside, but can anyone point me to evidence about how long the gestation period for different dementias might be, before they start to show up as major issues? Are we talking weeks, months, years or decades? And are there very early warning signs that would in the course of things just get dismissed as part of someone's character?
I suggest individual experiences can be as variable as can be. Early symptoms of my mother were so different to the early symptoms of I my husband the dementia was not recognised until at least 10 years after the onset.

Added to this are the different dementias, different age groups and different underlying medical conditions.

I think this is what makes diagnosis so frustrating.
 

canary

Registered User
Feb 25, 2014
13,689
South coast
This is an aside, but can anyone point me to evidence about how long the gestation period for different dementias might be, before they start to show up as major issues? Are we talking weeks, months, years or decades? And are there very early warning signs that would in the course of things just get dismissed as part of someone's character?
Nobody really knows, but I gather that the thinking is that things start years or even decades before it is diagnosed. Certainly in mum there were odd things that I just dismissed going on years before I suddenly realised that she had dementia.
 

Sarasa

Registered User
Apr 13, 2018
1,867
With my mum the first thing I noticed was that she didn't seem to be able to follow conversations when they didn't revolve around her. At the time I thought it was her being a diva, but now I think it was perhaps the first sign of dementia. That was a good ten years before things became really obvious. In the intermediate years she became more self-centred and started having some rather odd ideas firstly that a much younger tour rep had fallen in love with her, then that her neighbours could enter her flat move things around or take them and bring them back. At the time she could manage day to day things well and didn't have noticeable memory loss. It was more as though her logic boxes had fried. Mum was diagnosed with vascular dementia early last year and is now in a care home. Her memory is now very poor.
 

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