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Agony of non-diagnosis...

Discussion in 'Younger people with dementia and their carers' started by feeb, Oct 8, 2016.

  1. feeb

    feeb Registered User

    Sep 4, 2016
    North East
    This week I took my husband to see the neurologist following a recent MRI scan. I was hoping we would get a firmer diagnosis than "early onset dementia probably..." when we went. Unfortunately the mild atrophy apparent on the scan was not enough to offer a diagnosis and husband will need more tests over the next few months so the whole visit was a bit of an anticlimax. My husband has (characteristically of his disease, whatever it is) decided this was all excellent news and there is nothing wrong with him; the neurologist's hunch re Huntington's disease is also going to be wrong, so nothing to worry about there...

    I've been feeling exhausted since the visit to the consultant. I had really hoped we might know what we were up against and be able to plan. I'm finding it difficult to manage my husband's weird choices in diet (fish and chips daily) and apathy (constant TV) and I know he is really sick. He has no insight into his symptoms (inability to make decisions, manage money, read people's/my emotions etc etc ) and I am feeling lonely and tired...

    I've had offers of help and get support from his brother and my sister in law especially, but that hasnt stopped me spending the whole day under a blanket wishing the world (except the cat) would disappear for a bit...
  2. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Hi Feeb. Sorry to read of your anticlimax.
    Do though accept all offers of help. The earlier the better.
    Best wishes xxx
  3. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    As HillyBilly said. Accept all offers of help, and then hide under that blanket for a while if you need to.
  4. canary

    canary Registered User

    Feb 25, 2014
    South coast
  5. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I think people worry too much over the diagnosis too much. You can push the consultant into giving an opinion but that can never be confirmed until after death, so it is just that and opinion.
    My wife was diagnosed as having "early onset, mixed, atypical, symptoms consistent with Alzheimer's disease" what does that tell me...nothing.
    All of the planning and the help available is based on the PWD's physical condition not having a diagnosis of AZ and knowing the exact answer to the type of dementia isn't to me that important, others I know will disagree.
    From the sound of things he's happy enough in his own way so a confirmed diagnosis might only make him worse not better and more afraid of what the future may hold.
    Getting a definitive diagnosis (if that's even possible) won't tell you if he's going to become more; passive or more aggressive, more introvert or more extrovert, be a sitter or a wanderer his condition will be like everyone else on here his own journey.
    Sure they'll be lots of things you'll see and recognise form on here but many things too may never happen in his case.
    I'm sure we all like certainty in our lives but with AZ that's not an option, sadly.
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Sometimes it is useful to know what the diagnosis is as some drugs that work for symptoms in one type of dementia can be contraindicated for another type.

    I also found that I needed the diagnosis. He had been told for so long that all that was wrong was that he was depressed, that it was a huge relief when the diagnosis of FTD was made. I also felt vindicated as I had been saying all along that there was something horribly wrong, but no-one was listening.
  7. Hellyg

    Hellyg Registered User

    Nov 18, 2014
    East midlands
    To echo Canary's post, my husband also has frontal temporal dementia and it all sounds very familiar.

    Although at the time we had these symptom I did not realise it was dementia just thought he was uninterested in me and everything else. It was only when the symptoms got worse we sought assistance and got a diagnosis.

    Hang in there, and do keep a log of symptoms to share with the consultant.
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    But my point is you didn't get a diagnosis you got an educated guess, probably a well informed one and probably correct and some specific type of AZ are diagnosable but not always, without a PM.
    Obviously there is a difference between depression and AZ and I had to fight long and hard to get the GP to recognise my wife (at mid 50's) wasn't; menopausal, empty nest syndrome as the youngest had just gone to uni and any umber of other things they wanted to blame at the time.
    The OP says there is a diagnosis of "early onset dementia probably..." that in my view is as good as it gets sometimes, I was "happy" (in a strange way) when the doctors finally admitted that and it wasn't any of the other possible causes they'd been suggesting over the previous years.
  9. Rich PCA Carer

    Rich PCA Carer Registered User

    The helpful aspect of getting a specific diagnosis that fits all the symptoms is that you can seek specific support for the condition. Many early onset dementias are uncommon if not rare and it can be difficult to get relevant support if you can't put a name to the condition.

    We have found it critically important to know that my wife has PCA. It has enabled us to find the national support group, set up a local support group, meet with over 10 other local families and get access to a closed Facebook group on which you can get really specific help from true experts in the condition, both professionals and family carers.

    It is very true to say that no two people with dementia have precisely the same symptoms and this is as true for PCA as any other dementia, but the major symptoms for PCA relate to vision and spatial comprehension with added variations depending on how far the disease has spread beyond the visual cortex. This at least gives a general 'feel' to the sort of support we need. The key thing about the support is not foretelling the future or even being able to plan for it, it is knowing where to find the support when you need it.
  10. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I would echo what Rich says.
    When you are dealing with a rare form of dementia the presentation and early symptoms are quite different. Talking Point is second to none when it comes to Alz, Vas D, advice on how the system works, residential homes etc etc. But when it comes to specific problems of FTD (the sort that the OP has described) I have found the best source of advice to be from a specialist FTD forum.
    I fought long and hard to get a diagnosis and originally he was diagnosed with depression and marital problems. Even now, although he can do almost nothing for himself, the fact that my OH has no short-term memory loss, doesnt keep repeating himself and is well orientated in time and place makes even medical professionals who dont know about FTD question whether he really does have dementia. As he is of working age he now gets ESA and DLA (probably PiP soon), but if you are trying to get this a diagnosis of marital problems just doesnt cut the mustard.
  11. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    #11 BR_ANA, Oct 9, 2016
    Last edited: Oct 9, 2016
    My mum had her diagnosis of maybe Alzheimer

    It posted while I was writing.

    My mum had diagnosis of "maybe Alzheimer" 8 years ago on middle stage. Drugs were sorted on trial and error method. And as disease goes they were removed. When she died (September) she was only on blood pressure pills.

    For me the "maybe" diagnosis was helpful. I've got that there was a neurological condition, so I've got that my mum wasn't pretending or teasing, I've got that my mum needed care and help. So I had a understanding that she wasn't going to be better, ( of course I was denying the future that I had read on Internet).

    So I was glad with a maybe diagnosis, on her death I wasn't sure if I should or shouldn't ask for a diagnosis.
  12. feeb

    feeb Registered User

    Sep 4, 2016
    North East
    I suppose I am looking for as much certainty as is possible under the circumstances. I understand that medically that may not be possible. OH has more tests and was tested for Huntingtons this am. The consultant seems tenacious.

    I am pretty sure OH will not be going back to work. A firmer diagnosis would help re discussions with his employer and planning financially.

    I also have a son living overseas and we have had to cancel flights out to see him; I hold joint citizenship and moved back to the UK to marry OH. I dont think we can get this trip sorted until we have a bit more certainty, and I'm finding this difficult.

    I also know that a diagnosis could help with accessing resources, but I'm not holding out for much after reading some of the threads on this wonderful forum...

    Another reason is that we were planning to move house; again, I'd like to know as much as possible about whether my husband is likely to cope.

    I've spent the day driving OH round to various appointments and am still feeling pretty tired. I've always had a sort of pattern where I do loads and then need down time; I am finding this impossible to explain to OH.

    I really appreciate your replies. xx
  13. feeb

    feeb Registered User

    Sep 4, 2016
    North East

    I am so sorry to hear of your mum's passing. Thank your for replying. I also lost my mum recently and still "talk" to her. No one can take away your mother's love for you.
  14. Zana

    Zana Registered User

    May 12, 2016
    Every scan and medical test my OH has had has proved nothing but ....He realises there is something because he forgets words and we know there is something.
    Luckily our consultant is one who listens and what she has seen togther with our story leads her to a diagnoses of FTD.

    Not that it makes much difference OH is still OH we have our ups and downs but the constant hanging on waiting for an answer is over and that does bring relief.

    I hope you get some answers soon... (((((hugs))))
  15. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    For 5 very long years I saw my husband change into a stranger and the only people who saw this were myself and my daughter. He has FTD and typical of this rare dementia his memory was fine but he was losing empathy, logic, organisation, planning and spacial awareness. To have the professionals tell us for the last 2 of the 5 years that he probably had minimal cognitive impairment was not helpful. Until we got a diagnosis of "dementia" -but not specific at that time, no support was available which was helpful. The link worker scheme in Scotland is invaluable in the first year after diagnosis but 5 years is too long to have to wait for help. Also, you cannot announce to friends etc that your OH's behaviour is due to dementia until you have that diagnosis. It's like living in a secret nightmare for all concerned. Many marriages must suffer and relationships with family members are ruined because you don't know if this is a marital problem or disease. So, diagnosis as early as possible is ABSOLUTELY vital.
  16. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    OH has Parkinson's but has been told that lewy Body setting in...that hasn't stopped him starting to get nasty and I am so tired
  17. feeb

    feeb Registered User

    Sep 4, 2016
    North East
    Sorry to hear about the tiredness. I think I know what you mean. It's the having to think all the time... I thought I'd got past the stage in life (caring for kids) when I had to be ong the go and alert all the time.

    But I am so sorry your OH is nasty. That must be very upsetting. I have a new friend (through my step-mum) and she has just retired because her husband is newly diagnosed with lewy body. Reading your post has made me think to tell her about this site. (So that's one positive... even if it doesnt help you.) x
  18. Leitch

    Leitch Registered User

    May 28, 2016
    Non diagnosis

    Hi feed, I am new to TP but your issues really hit a cord with me my OH has problems but he is in total denial. The stress is unbearable as he is only 60 but I must respect his wishes not to go and find out and as I read about your frustration maybe for some going on this road peacefully for them is what has to happen yet not sure how to deal with everything.

    Sending you hugs
  19. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I would guess that its not denial, but anosognosia - an inability to understand that there is something wrong (common in dementia). There comes a time when you have to change your mindset from going along with and enabling what they want, to persuading and enforcing what they need.
  20. Pb46

    Pb46 Registered User

    Mar 9, 2016
    Ulverston, Cumbria
    ?? Huntingtons

    Hi feeb, I was just wondering why your Neurologist queried Huntingtons. The same thing has just happened to us. My OH was diagnosed with Alzheimer's aged 50, in March. He's terrible fidgety, always has been. We recently saw a neurologist for the first time who wants to test him for Huntingtons. Which seems bizarre as there's no family history. We are doing nothing about testing at the min as the implications for our kids and family are massive, and we are only just starting to get our heads around the Alz diagnosis. So at the min it can wait. My OH is exactly the same, nothing's changed and he's fine according to him ( Everything's changed and it's not fine according to me, I don't recognise him as the man I knew ) xxx

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