Advice please for getting a dementia diagnosis and dealing with 'know-it-all' laymen

Discussion in 'Memory concerns and seeking a diagnosis' started by Caracoveney, Feb 15, 2016.

  1. Caracoveney

    Caracoveney Registered User

    Feb 15, 2016
    4
    Hallo.

    I am 65 years old and went to my GP (a new one at the surgery) in the middle of December 2015 as I was worried about the increase of problems over the previous year or so with my memory. I won't go into TOO much detail as I guess that most people on this forum are familiar with the symptoms that change from being 'it's your age, dear' to something more 'sinister', worthy of diagnosis. Enough to say that my brain cannot 'hold onto' thoughts, I say and write 'random' words, cannot remember things I have just done or said, leave things in the microwave and don't remember them until smoke appears, forget that I have bought things, until I stumble across them later, get very frustrated in conversations if someone interrupts, as the whole conversation disappears from my head, etc. Enough of a change anyway to go to the doctor. I passed the 'memory test' questions ok (someone's name and address), but surely that doesn't cover everything? But anyway, she referred me to the Memory Clinic (not sure which particular one it was).

    Last summer, I lost partial sight in one eye and a very concerned optician took X-rays or scans (can't remember which) which showed that an artery was blocked in that eye. He referred me to the eye clinic at the hospital but by the time I woke up next morning (they couldn't see me that day), my sight had returned (which I understand from my optician does happen), so they had nothing to go on except the picture the optician took on my phone of his X-ray. The optician said next day (he asked me to phone him to find out what the hospital said) that it could be a 'mini-stroke' and that I was lucky that it had affected something that could be 'seen', ie may be a 'warning'. My GP (another one) was asked to increase my cholesterol medication by the eye clinic.

    A few days after seeing the new GP in December, I mentioned (unwisely, as it turns out) the Memory Clinic referral to a senior nurse at the GP's surgery who gives me blood tests (because of some medication that I am on). She airily said, 'Oh, it's a migraine, I've had that. Nothing to worry about.' I said that I had never had a migraine in my life but she insisted that she was right and that you can get migraines without pain, but your eyes 'go a bit funny'. Well, I Googled this when I got home and yes, you can get migraines without pain, but the eye problems last a few minutes, not from midday till I went to bed well after midnight!

    I have learnt not to say any more to anyone else, but everyone that I DID mention it to seems to be a 'specialist', saying, 'Oh, that happens to me'. But they don't KNOW what happens every single day to me, and the more you try to tell them, the more they insist you are over-reacting, and undermine me. Only one person (the person I speak to more than anyone else) knows how badly these things have affected me over the past year or so or even longer.

    The thing is, after more than 6 weeks (end of January), I still hadn't received an appointment from the Memory Clinic so I asked the receptionist at the GP's surgery if a referral had been made. She couldn't see anything relevant on my records and she typed a 'reminder' to the GP to 'nudge' her.

    Nothing has come from the Memory Clinic yet (now Feb 15th). Is it possible that the senior nurse could have accessed my records to 'cancel' the referral as she had 'diagnosed' (or rather 'mis'-diagnosed) my problem herself? Do I wait another month or two to see if an appointment arrives? Did the GP say she would refer me to 'get me out of the surgery'? I would have thought that if you can have a mini-stroke which affects your eye, you can have a mini-stroke that affects other parts of your brain without noticing pain or anything physical? The 'nurse', when I mentioned that I do a particular thing to 'check' that I have checked that plugs were off (a note on the door) said, 'Well, you can't have dementia if you can remember to look at the note'. Surely, different areas of brain get affected by different arteries or whatever? So that I can remember particular things, but not others. My long-term memory seems to be becoming astoundingly good. I've always had a good long-term memory but now am remembering many more things that happened in my youth, which I understand can be a symptom of dementia onset.

    Please, can anyone relate to any of this? I am getting so frustrated and feeling constantly undermined by 'laymen' and even 'not-so-laymen' like the nurse at the surgery. Should I just assume that if I don't get an appointment that the GP didn't have any real intention of sending me to the Memory Clinic? I am not a hypochondriac. I have health problems which are under control (ulcerative colitis and rheumatoid arthritis, as well as high blood pressure and high cholesterol), and don't like making 'a fuss' about anything.

    Thank you.
    Caracoveney
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    #2 Shedrech, Feb 15, 2016
    Last edited: Feb 15, 2016
    Hi Caracoveney
    a warm welcome to TP
    I'm sorry your concerns don't seem to have received responses that help settle your mind, that's from the 'medics'
    so personally, I'd be on the phone making an appointment to see your GP and discuss all of this - whatever is going on is worrying you and you have every right to ask your GP to check about the referral - if some form of dementia is not in play then the GP needs to test for vitamin deficiency etc - so call today, please - the optician clearly wants things looked into
    as for friends - I think we all want to reassure our friends and family - and that means sometimes we say something thoughtlessly, not really taking into account how concerned our friend is - and sometimes we just don't want to deal with someone's concern so give a positive response to set it aside - and if dementia is not within your experience, 'memory problems' seem easy to dismiss because we all 'forget' stuff, and don't realise that it's not the same at all
    so I'm glad you have one person who is listening to you - would you feel comfortable in asking that person to go to the GP with you for back-up, another voice may help explain your worries - maybe print out your post here so the GP will understand just how concerned you are
    please do make a fuss - this matters to you and you deserve to know what is going on with your health
    do come back and let us know what the GP says
     
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Hi Cara

    Welcome to TP and you will find lots of support on here.

    I think you have been incredibly brave and sensible to ask for an appointment at the memory clinic. You need to know what is happening to you, it is important for your well being. Nothing you have said makes me in any way think that you are a hypochondriac.

    I think I would ask the surgery where the referral has gone to and then phone the clinic to ask where your referral is on the list. I would hope that the nurse has not over-ruled your GPs referral but you have been waiting a long time. I definitely wouldn't wait any longer and if necessary I would start to kick up a fuss. They have a duty to listen and to make an early diagnosis wherever possible but more than anything this must be extremely stressful for you and I would tell them that - before you have another problem to deal with! If the new GP hasn't made the referral then go back to a GP that you trust as soon as you can.

    I assume that they have increased your medication in accordance with the optician's request?


    When you say The 'nurse', when I mentioned that I do a particular thing to 'check' that I have checked that plugs were off (a note on the door) said, 'Well, you can't have dementia if you can remember to look at the note' This is nonsense - we use notes all the time to remind and prompt.

    This is a tricky situation but you are right to pursue it and not leave it to chance.

    I can't help with the detail of your problem but i'm sure others will have the experience.

    Take care and keep posting, everyone is here to support you xxx
     
  4. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    872
    Hi there,sorry you are so worried.Just to echo what others have said,please go back to you Dr and explain how you're feeling and chase up your appt.Re long term memory,I'm not sure it improves in dementia but tends to hold up better than short term memory.Have you been tested for B12 deficiency?This can cause some dementia like symptoms.(Fizzie I think maybe what the nurse meant is that in dementia(other than early stages)notes don't help because comprehension goes.That certainly happened with my Dad.)
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    my ma could read right up until she died and often took more notice of the written word than the spoken - she had advanced dementia
     
  6. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    872
    Everyone is different,my Dad can also read but has no understanding of the words.We were all puzzled that he could read'bathroom'for example but had no idea what a bathroom was.
     
  7. Caracoveney

    Caracoveney Registered User

    Feb 15, 2016
    4
    Thanks for taking this seriously

    Hallo again

    I did reply to you nice people who responded to my earlier post about my referral to the Memory Clinic, which hasn't materialised yet, but I won't duplicate it all now, as it is getting late and I seem to have sent it to a 'black hole' somewhere as can't find it! I was grateful that several of you had taken the trouble to write to me and make suggestions and most important of all, took it seriously! fizzie suggested a possible B12 deficiency and looking this up, that might be a very relevant suggestion - I am surprised that the GP hasn't asked for a test for that. (The blood tests that I have are related only to the Methotrexate that I am on). And I do agree with Shedrech about friends and families trying to make light of things in order to 'reassure' but it has the opposite effect. I would rather know what I'm dealing with in order to deal with it! Anyway, to cut a long story short, I will wait until the post tomorrow to see if anything arrives from the Memory Clinic then contact my GP (or at least the receptionist as difficult to get straight to the doctor) again if nothing comes to see what has happened about the referral. Many thanks for your contributions and will keep you posted. Caracoveney
     
  8. Caracoveney

    Caracoveney Registered User

    Feb 15, 2016
    4
    Follow-up to appointment for Memory Clinic


    I am just updating you on the progress re. my Memory Clinic appointment. Nothing had come in the post about it this week, so I have just phoned the surgery and the receptionist has said that the referral HAD now been sent, following my reminder at the end of January, after 6 weeks of fruitless waiting. She apologised profusely (it wasn't HER fault! but I know that these things do happen, so not the end of the world) and said that it would be a few more weeks now. Anyway, I am happy with that now. So obviously worth chasing up these things.

    Thank you all for your replies.
    Caracoveney
     
  9. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    Hi Caracoveney
    that's good - at least you know you weren't being ignored
    keep in touch :)
     
  10. john51

    john51 Registered User

    Apr 26, 2014
    289
    Male
    Dunstable, Bedfordshire
    Hi
    I wonder if something you said right at the start of your post is the problem; ' I am 65 years old'.
    There is still a widely held belief even in the medical profession that dementia is only on old persons disease. There are many thousands of us under 65 who have a dementia diagnosis but I be that like me most of them had to really push to get taken seriously. I was diagnosed at 51 an only then after a stroke another old persons problem. They noticed a memory problem that couldn't be due to the stroke.
    I'm sorry to say it but you are probably going to have to push and push maybe even with the memory service.
    It's a good day today. I write more coherently than person with dementia possibly could don't I?
    All the best with it

    John
     
  11. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035
    Hello Caracoveney

    Yes, I relate apart from being 10 years younger than you. I do suffer from migraine and have for 30 years and now with hindsight - that wonderful thing;) - I realise my optician was the first to send me for a hospital check up as a severe migraine had altered my vision - but by the time I got to the hospital appt, they told me there was nothing wrong - but I knew there was. Still have no diagnosis because I went into full blown hallucinations and there was 'nothing wrong with me' but I was asking for help.

    I don't think any professionals, unless they have personal experience with dementia realise quite what it is like and to expect the patient to follow up their own Memory Clinic appointment is, apart from being ironic, a total lack of understanding of the condition. I write notes like you do, I have had to learn to but also know they wont always register with me but without them I would forget even more than I do already.

    Things are very slow in my area re. Memory Clinic, am supporting a friend, and I would write yourself a note to ring them once a week to make sure they know you are still waiting, I don't think one should have to but it seems one can easily get forgotten such are the volume of people in the system.

    I hope you get your appointment soon.

    Best wishes
    Sue:)
     
  12. Caracoveney

    Caracoveney Registered User

    Feb 15, 2016
    4
    Thanks for the further contributions. I suspect that John has made a good point here about people thinking that it is only an 'old person's' condition. I know that that is not the case (apart from Sue's evidence) as I used to be a home carer and one of my ladies was only in her late 40s/early 50s and although she lived independently at the time, she was often taken home by people in the village after she had been found 'wandering' as she couldn't remember where she lived and other symptoms, and she did have 'early onset dementia'.

    Sue's experience at the hospital is frustrating and my feeling of frustration when I went to the Eye Clinic at the hospital the day after my optician had found my blocked artery is similar. They listened to what I said, looked briefly at the tiny photo of the x-ray that the optician had taken (at that size, you couldn't really see the details but they didn't enlarge it) and was sent home with a 'well, if it happens again, come back'. As I said, my cholesterol drug was increased, but no mention of tests at another department for perhaps other 'mini strokes'.
     
  13. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Am so glad referral is now sorted out for you. Keep chasing it up. You are brave but I am like you too. I want to know things. Years ago There was a question re me having MS and I wanted all details. Wishing you the best of luck.

    Support and hugs from Ireland.

    Aisling
     
  14. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Ps Please try to ignore all the people who seem to know everything. They seem to be everywhere and be much better if they kept their useless opinions to themselves! At times it is much better to listen to people talking! They have ideas re depression too ie pull your socks, be positive etc etc. Thank God for TP. Keeps me sane.

    Aisling
     

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