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Is this the norm? i`m new here

Discussion in 'Younger people with dementia and their carers' started by snoopy33, Jun 4, 2006.

  1. snoopy33

    snoopy33 Registered User

    Jun 4, 2006
    Hello, i`ve just joined your group.My husband ( 58 )has been having problems for a couple of years now, so in jan 05 he saw a neurologist who, after a few tests said it was possible he had frontal lobal or vascular dementia.He then referred him for more tests plus a mri scan.One lot of tests were done last sept, and the mri in jan of this year.He`s since had 4 appointments cancelled with specialist, supposed to be one next week but i`m not holding my breath!
    His gp tried to get hold of results, but had no luck, no one has seen him his mri so i am in the dark and have now accepted that i`ll get no help what so ever from the nhs.My husband is going worse with his memory plus obsessions etc.
    Before he had these tests he was being treated for so called depression but it was then realised he did`nt or had`nt had it, hence these new lot of tests, plus his dad had early dementia, under 60yrs.
    Can someone please tell me that its the norm to still wait after 17months for some sort of diagnosis?
    thanks val :confused:
  2. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Val,
    Welcome to TP. I can't answer your question, as we bypassed some of the system by having mum seen privately initially. When we did see NHS psychiatrist he couldn't find the scan results, and refused to have more than two people in the room (ie mum and dad) - mum was already very confused by this stage, so basically dad had no support. Long diagnosis does seem to be a common complaint on here; I'm sure others will be able to tell you more soon. So welcome again.
    Best wishes,Amy
  3. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex
    mri results

    My husband has vad his M R I scan was reported to our G P very soon . He was also treated for depression at first . He is on quetiapine and is mostly managable at the moment!!!

    regards Cynron x x
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    #4 Margarita, Jun 4, 2006
    Last edited: Jun 4, 2006
  5. Kayla

    Kayla Registered User

    May 14, 2006
    Long diagnosis

    Several years ago I asked the GP if it was possible that my mother had suffered a very small stroke, as she complained of "having lost whole days" and she was getting very "vague". Some of her symptoms resembled those of my father who had a major stroke (which he recovered from). The GP said it was impossible. When she had very distressing hallucinations, the mental health doctor who visited her at her home, said it was quite impossible that she had Senile Dementia because she was clean and tidy and the house looked orderly (she had a cleaner). She was given Haliperidol and Citalopram tablets.
    It was only after she had been in a care home and then fallen, resulting in a move to a nursing home, that the matron explained that Mum had Vascular Dementia.If I had known more about this at the time and discovered Talking Point earlier I think I could have dealt with problems better. I do get the impression that ordinary doctors and nurses don't really know that much about dementia unless they have specialised in it. Perhaps more training should be given at medical schools.
    Each patient seems to have very individual symptoms and there are many different variations of dementia.
  6. snoopy33

    snoopy33 Registered User

    Jun 4, 2006
    Thank you all for your replies

    I`m glad i found these message boards.
  7. zed

    zed Registered User

    Jul 25, 2005
    yes it is normal!

    Oh yes, it is normal for doctors to take a very long time to get a diagnosis.

    My mum was 57 when she was originally diagnosed with dementia. She was seen at 2 hospitals, but 3 different types of doctors, had 2 different types of scans, all over a period of about a year. During that time we were told Alzheimer's, then Frontal Lobe, then vascular. The Alzheimer's unit at her local hospital refused to see her as they said she had a different type of dementia. In fact the nurse there told us it might not be dementia at all, while at the same time the doctor wrote a letter saying it was Frontal Lobe. The psychiatrist at the Community Mental Health team wanted to discharge her as they said the Alzheimer's unit at her local hospital should deal with her.

    In the meantime we begged to be seen by a neurologist so we could find out what was going on. Her psychiatrist refused and actually said "her diagnosis doesn't matter". The final word was frontal-lobe dementia, but the psychiartrist refused to refer her to the National Hosptial for Neurology, where they have experts on Frontal-Lobe dementia. At no point had a doctor who actually knew anything about it talk to us. The psychiatrist had to look it up in a book and didn't know how to interpret the scans.

    So we went back to her GP who referred her to a neurologist at another hospital. He has now diagnosed her with Alzheimer's, and she is on aricept, which is helping. This is over a year after the Alzheimer's unit at her local hospital refused to give her aricept. Thank goodness for this neurologist. By the time we saw him it was more than 2 years after we orginally went to the GP.
  8. HLon

    HLon Registered User

    May 30, 2006
    Yes it's normal

    hi Val,

    It took about 2 years for us to get a diagnosis... my mum has early onset dementia and we went through possible depression, possible menopause etc, tho' my hunch was always that it was something more serious like dementia. I think it's hard for health professionals to see what you see on a daily basis and the changes that you know intimately. The first point of a GP seeing someone for c 10 min seems especially tough in that respect. Meanwhile, scans and tests are extremely helpful but I think that science still lacks an absolutely definitive test to confirm the illness, so this means that lots of evidence has to be built up for a diagnosis.

    Thinking of you...

  9. bel

    bel Registered User

    Apr 26, 2006
    Is this normal

    Hi Snoopy 33
    YES unfortuantly is does seem common not much help i know
    My hubby has had problems for years not worked for the past 2 years because of it they have come up with all sorts of theories he is 59 only today they are saying probable Frontal Lobal Dementia
    It is terribly frustrating I am also quite new to TP so can only go by my own experiences would of liked to of helped more
    Keep posting there are a lot of lovely people here with a lot of experience
    Love Bel x
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    ... it took close to 7 years for us to get a diagnosis! Even that speed depended mostly on private medical insurance.

    Or maybe the gravy train of private consultants actually held things up.
  11. rummy

    rummy Registered User

    Jul 15, 2005
    It is the same across the pond. It took two years to find out my Mom has AD. Finally finding a neurologist that specializes in dimentia was key. Her two MRI's didn't show anything wrong and his diagnosis had to come from her symptoms and MMSE test. He told me it is very hard to diagnose and I think they use a process of elimination to come to their conclusions. He did say that he has always been confused as to why my Mom's MRI didn't show more damage and might do a PET scan next time. I asked him if it would make any difference and he said no, so why put her through that?
    Take care,

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