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Struggling to get a diagnosis in concrete FTD

Discussion in 'Younger people with dementia and their carers' started by Hayleymarie, Apr 19, 2017.

  1. Hayleymarie

    Hayleymarie Registered User

    Sep 22, 2016
    Just wondering if this is common with FTD? My Mum has been ill for over a year and sectioned several times. Doctors said they suspected FTD but could not confirm with MRI scan as there was not enough change over the period of a year.

    Next step is EEG and then an appointment with doctor. I feel so helpless and I know a diagnosis probably won't make much difference but wondered if it is common for the doctors to be so vague?

    Thanks in advance :)
  2. marionq

    marionq Registered User

    Apr 24, 2013
    Yes it is. When it comes to diagnoses involving the brain they are never 100 % it seems to me.

    They will give you their best judgment but I note that a lot of patients have more than one type of dementia or brain problem.
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Yes, especially if its behaviour variant FTD. The symptoms of bvFTD, being problems with behaviour, emotions and decision making, but usually not memory, are almost impossible to quantify. It took 4 years for my OH to be diagnosed (having been "diagnosed" with depression and marital problems along the way) and even now he can pass the Mini Mental State Examination, 100%, no problems :rolleyes:

    Also, be aware that FTD cannot be "definitely" diagnosed until the post mortem - until then the best you will get is "probable" FTD once progression is demonstrated.
  4. Zana

    Zana Registered User

    May 12, 2016
    In a word Yes...

    OH was given a formal diagoses of FTD last year only because he had been seen by specialists in 3 hospitals and had been scanned more times than we can count without anything showing up , hes had countless blood tests and several very painful Lumbar puncture tests which have failed to provide any concrete proof but his behaviour is consistant with FTD as is his loss of languge skills..

    We are lucky that we have a good dementia team at our local hospital but with FTD its always difficult because alzhiemers is the one everyone knows its the one there is some treatments for the one that day care and homes are set up to deal with and the one most doctors recognise...
    Sorry but thats the way it is.
  5. Hellyg

    Hellyg Registered User

    Nov 18, 2014
    East midlands
    My husband was diagnosed by a SPECT SAN which shows blood flow to areas of the brain. Originally we were told Alzheimer's. His MRI/CT scan were all normal.

    We then had a series of psychiatric tests and the diagnosis changed to the semantic variant of FTD.

    Until they had evidence to support a diagnosis they held off from saying, although to be fair the consultant dud gave hints she thought it was some form of dementia prior the the SPECT scan.
  6. Hayleymarie

    Hayleymarie Registered User

    Sep 22, 2016
    Thanks everyone for your advice. It's so frustrating isn't it? The neurologist was doing a memory test on my Mum and of course she passed with flying colours but I was sitting there thinking this is pointless as I know that FTD doesn't affect the memory. I should have spoken up then really.

    Can you request a SPECT scan Helly or do you have to wait for the hospital to refer you for one?
  7. Hellyg

    Hellyg Registered User

    Nov 18, 2014
    East midlands

    Yes very frustrating. The consultant at the memory clinic recommended my husbands. I knew very little about it at the time, indeed still hoped it was depression or stress as he was only mid 50's. I would try asking for one or maybe ask what is available to help gain a diagnosis. I think you have good cause to ask since they have already said they suspect FTD.
  8. Zana

    Zana Registered User

    May 12, 2016
    Ive just bought and read this book https://www.amazon.com/What-Its-Not-Alzheimers-Caregivers/dp/1591025842

    In it is a check list that helps FTD diagnoses because as many have mentioned this cannot be proved by scans.

    The check list is easy and its the list that doctors will be looking at to determine if its FTD and what type. Even though I know my OH's diagnoses it still helped me to recognise the symptoms of his illness as opposed to him be stubborn!

    Its an easy read but quite helpful although the healthcare agencies listed wont mean much if youre not in the USA
  9. Philbo

    Philbo Registered User

    Feb 28, 2017
    My dear wife was diagnosed with FTD in Jan 2014. A round 2 years prior to this, I had become concerned about her increasing tendency to repeat herself, plus some odd "senior moments" - she was only in her early 60's.

    I eventually managed to get her to see our GP and even at that early stage, she did badly with the memory tests. She was referred to the memory clinic, had 2 MRI scans and we were told that they suspected it was FTD. She than had a SPECT scan and they confirmed the diagnosis.

    She has very bad short term memory, poor cognitive abilities and quite bad aphasia.I have to help her with dressing, personal care and I also do all the housework, cooking etc. It's not that she is physically unable to do any of this, just that she has forgotten the processes and/or has a very short attention span. So, a year ago, we would prepare lunch together, she would often butter one slice of bread then wander off and sit in the front room. Now, she just sits there, whilst I multi-task (well, as much as a chap can try to - lol).

    None of this I begrudge, as she has looked after me very well, before getting this dreadful illness.

  10. Hayleymarie

    Hayleymarie Registered User

    Sep 22, 2016
    She is lucky to have you Phil! I will definitely enquire about this other scan.
  11. Philbo

    Philbo Registered User

    Feb 28, 2017

    Good luck.
  12. Cghrmu

    Cghrmu Registered User

    Jun 2, 2017
    #12 Cghrmu, Jun 2, 2017
    Last edited: Jun 2, 2017

    Hi Neurologists do not like diagnosing FTD even with all the evidence, spects, MRIs, evaluations, etc.. My neurologist decided the other day he didn't know FTD enough and has transferred me to another neurologist (still waiting for that One).

    Remember the biggest evidence is the stories from the family and friends, keep a book Notting down the dates of all the differences you notice.

    Most important is don't give up, it's frustrating but you will get there, good luck.
  13. Hayleymarie

    Hayleymarie Registered User

    Sep 22, 2016
    Thanks Cghrmu I think what you say is ringing true in our case aswell. My Mum is very up and down can be fine for weeks at a time and then goes downhill again, it's so very puzzling. Sorry to hear of your plight too :(
  14. Cghrmu

    Cghrmu Registered User

    Jun 2, 2017
    Not puzzling

    Hi nice to hear back from you, I hope things are stable and happy at the moment. I don't find it puzzling at all, a Neurologists explained it quite well, I will try to relate the info for you.

    Our bodies have natural and man made stresses in our life, a normal health brain can handle this by passing the data around.

    Now with an FTD brain the harding and shrinkage of the brain means the brain is unable to pass this data around correctly causing it to act like a pressure cooker. Once the brain has reached a certain point it of course can't handle it so partially shuts down. Hence the ups and downs.

    IF I'm wrong please correct me, but it makes sense to my brain

    Please keep in touch and all the best
  15. ariadne17

    ariadne17 Registered User

    Jul 17, 2017
    Helpful referral

    Hi, everyone,

    This is my first post on here...my husband has behavioural variant FTD with an overlap of Progressive Primary Aphasia. He was initially given a diagnosis of Alzheimer's at the local memory clinic which I questioned and continued to question for 2 years. I asked our GP for a referral back to the memory clinic but was referred to a different one (our GP is in a different London borough). New memory clinic doctor agreed with me and did a referral to the National Neurological & Neurosurgical Hospital in London. We waited for six months bit got to see a lovely and helpful team there. Sadly, of course, there is nothing to be done medically although there is a Rare Dementia support team but, having the correct diagnosis is helpful.

    Hopefully, someone reading this might benefit.
  16. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    hello ariadne17
    and welcome to TP
    good to read that you now have a helpful team around and support available
    keep posting; it's so useful to share experiences
    best wishes
  17. Cghrmu

    Cghrmu Registered User

    Jun 2, 2017
    6 months left

    Just been given a D1500 notice with the reason being, End of Life, Frontal temporal dementia,

    Time to live for the now
  18. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I've looked and I can't find out what a "D1500 notice" is, can anyone enlighten me?
  19. Rich PCA Carer

    Rich PCA Carer Registered User

  20. kazb

    kazb Registered User

    Aug 1, 2015

    I was diagnosed with altzheimers 2 years ago,with MRI and SPEC scans,right side was shrinked.
    now because i actually did a little better on a test that i guessde on,as i didnt no the amswers so guessed.
    The consultant wants another MRI as said there should have been changes in the 2 yrs. My worl was turnde upside down and i was a nurse, lost my job, licence and husband and nearly my house, son had to sell his house and come home and look after me as i was flooding the house and leaving the cooker on and couldnt go out myself and much more.
    If there is no changes from prev scans he said i dont have altxheimers and its probably depression.... OMG i have never had depression and dont now know what to do.
    I couldnt go back to nursing as they took my registration off me, and to be honest i havent got a clue what i could do as i cannot even remember what dat or time it is. HELP ....... its going to be 6 weeks for MRI.

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