tests clear but problem still exists

Discussion in 'Memory concerns and seeking a diagnosis' started by scb, Jun 27, 2019.

  1. scb

    scb New member

    Jun 27, 2019
    7
    I have a partner who has been experiencing confusion, difficulty with using common sense, remembering appointments, and generally becoming rather vague. He has had CT and PET scans as well as many cognitive tests and his results are good. However, he has problems understanding and remembering normal directions or requests. He has not had a stroke or heart attack and is on statins and BP meds. How can I find out what is wrong?
     
  2. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,478
    Ireland
    Hello, @scb and welcome to Talking point.
    My husband started out in a similar way. I knew he had dementia, his doctor knew, but for a very long time, all tests came back fine.
    All you can do is keep a log or diary of incidents, behavior and times of forgetfulness, and let the doctors see that. Sometimes, we just have to wait for the situation to become clearer.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,098
    Kent
    Hello @scb

    My husband wasn`t tested, it was only with hindsight we realised his dementia had been developing for years.
    Even so, by the time he was tested and diagnosed, his scans showed only slight brain shrinkage.
    Perhaps with some people it is a waiting game even though you know something is wrong.

    I agree with keeping a log or diary of areas which cause concern. It is what I did and the GP did take action eventually.
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    hello @scb
    a warm welcome from me too
    I guess if your husband has undergone the assessment you describe, he has also been checked over for low vitamin levels, stress, depression and even thyroid function as there are other reasons to suffer symptoms similar to those of dementia
    keepong a journal will help to give the medics a wider petspective on whatever is going on
     
  5. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    There was a thread on here recently where we were talking about how the NHS encourages us to get an early diagnosis, and it included a link to a consultant who said that actually it is often pretty difficult to diagnose early on, it's only as the illness progresses that you see definite signs on tests and scans. So trying for early diagnosis is a bit of a double edged sword really. My mother was initially told there was nothing wrong with her and to come back in a year, but within 9 months she had deteriorated enough that she returned to the memory clinic and the tests showed clear problems.
     
  6. scb

    scb New member

    Jun 27, 2019
    7
    Thank you everyone- I was beginning to think I was imagining these developments- I’m resolved to keep the journal as you suggest.
     
  7. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Initially my husband did well on tests even though I knew something was wrong. After all, we live with the person, don’t we? Eventually his scans showed deterioration ‘commensurate with Alzheimer’s in its initial stages’ however I’d suspected that for quite a while.

    5 years down the line and he is still pretty good and most people who don’t know him well don’t realise he has a problem. I should be grateful, I know, for the slow progress up to now but maybe that’s in part due to him getting put on meds at a very early stage. I agree with others who have suggested keeping a log. I did this and it helped in getting a diagnosis.
     
  8. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    My mother has Alzheimers yet was never put on any medication. Donepezil was not offered, Memantine was later suggested but after ruminating about it for a year they decided against it.
     
  9. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,408
    Male
    Cornwall
    hi I have dementia and did extremely well on most of the various MMSE assessment test let’s face it if you know the answer or subject you should be ok , even now after 20 years I imagine I would get a fairly high score my diagnoses was confirmed after having PET & SPECT brain scans but I’m dancing along fine no worries
     
  10. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Hi countryboy, it’s good to hear you are getting along fine with no worries. It gives others hope that things need not necessarily be bleak. Best wishes to you.
     
  11. scb

    scb New member

    Jun 27, 2019
    7
    hello again. Well, I received the dementia diagnosis for my husband today. The psychiatrist said that it is likely to be Alzheimer's. he asked my husband if he wished to know the diagnosis and my husband said no. How do I manage getting support and advice and assistance if he has not actually received the diagnosis himself. The psychiatrist said that he is required to report this to the DVLA and that my husband will likely be asked to do a driving test. If no diagnosis has been given to the patient, what will I do when the letter comes from the DVLA? Also the doctor said that I would be provided with a connection to a support group, and a nurse would be in touch to advise me. How do I get out to a support group without saying anything? I am totally confused. Although I suspected this diagnosis, I am still very shocked. He is only 72.
     
  12. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,405
    Female
    England
    Hi @scb ,

    The fact your husband did not want to know the diagnosis won't take away the fact he has Alzheimer’s and is going to need help and support at some time in the future.

    If the consultant mentioned diagnosis as against the word results really was telling your husband something was wrong. Alzheimer’s can be helped by medication as can other symptoms like depression, with the diagnosis comes a 25% disregard on council tax and other benefits as and when required. It’s going to be very difficult to get the help you will need. Perhaps have a word with your doctor.

    Maybe once a little while passes he will come round and hopefully accept the situation. It’s frightening enough for us as the spouse, how much harder must it be for them? My husband was diagnosed at 62.
     
  13. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    In practical terms, the fact your husband was seeing a doctor at the memory clinic indicates he knows there is a problem, he just doesn't want to be confronted with the diagnosis. So for the DVLA forms, plus applying for any support, you can say it is due to his memory problems when you mention it to him - but obviously you provide the diagnosis to those who need to know. Quite often the PWD is not able to retain the information even if they are told, and/or they are no longer able to fill out forms or apply for support, so it shouldn't be a problem if you are applying for services on his behalf - you can give the information without him being confronted with it. Do you have LPA for him yet?
     
  14. Peachez

    Peachez Registered User

    Jun 19, 2016
    120
    Female
    South East England
    Wanted to let you know that I've been where you are now, and you are not alone. Keep looking after yourself. Develop your resilience and fortitude as best you can. Whatever is up with your beloved, time will tell. I kept a diary too in the early days (2015), it helped with the medics, but also helped me a lot to write things down - on rereading, it also helped me be more objective about what was going on, so useful all round . Good luck. x
     

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