Just starting on this ride...

[Eogz]

Update -
I have my appointment with the memory service Nov 10th.
I guess I will get the result of my CT Scan and any assessments they do (though I imagine I should do 'well' on those... My issues tend to be organisation, working memory/distraction and some perception issues.
I know it's unlikely to result in a clear picture but I will be a step closer to understanding what is going on, maybe.

 

[Izzy]

That’s good news @Eogz. I’m glad you’ve got the appointment. I hope someone will be able to attend the appointment with you. I know how hard it is to take in what’s said at medical appointments and another pair of ears can be useful. I’m not sure if that’s possible re Covid restrictions of course.

 

[MTM]

Hi,
I'm a younger person (50) experiencing some cognitive issues, I'm at the very start of this, though the issues have been around for a few years and very slowly getting worse.
I noticed them myself more in the last 2 years, with some arthritic/pain issues, mostly my cognitive stuff I put down to issues with pain management, stress at work and life.
My issues are slight memory problems (names (not family), losing things, organising and planning, apathy/tiredness, some coordination (very mild)).
We bought a house in November, it has low doorways and beams, if I'm walking through, no problems at all, If I am in anyway distracted, tired or have anything on my mind, Bang, I'm hitting my head). A few times now, I've missed or completely taken the wrong slip road off the motorway. These are a few examples.
I spoke to my GP about a year ago and got nowhere, I was told not to worry about it.
A year later we had the same discussion and he ordered general blood tests, nothing came up at all, I'm healthy. Initially the GP was going to end it there, he felt that pain management may have something to do with a slight cognitive decline, losing weight and exercise would help...
I said fine, but I would keep a diary and again emphasised the symptoms I've experienced above and how unusual they were for me to experience them.
30 mins after the call, he rang back and agreed that these could be early signs of dementia or something else. I agreed that it was a concern and he has agreed to refer me to the memory clinic and for a CT Scan.
As much as I don't want a diagnosis, I do want to know what is going on, my partner notices it as did my sister who visited for a weekend a few weeks ago.
But it is all so mild and difficult to define.
I'm struggling with work, but they are also understanding so have patience with me, which is great.
I'm keeping a diary of all events of note for when I do see someone.
Is there anything else I can be doing that will help and hopefully avoid me being fobbed off?
No appointment yet for the scan or the memory clinic, so I'm happily waiting, it's just a worry.
I know something is wrong, my thinking is really fuzzy and though still able to do al most everything, I really have to think twice and make sure I am carefully considering every action at times.
I'm grateful for any advice and thoughts you might have. Apologies for the long post.

I just wanted to say, one, I think you are doing exactly the right thing in raising your concerns and being aware. The diary sounds great. Going into this with your eyes open is surely the best plan for you and those who love you.

Second, you mention pain. I wanted to flag up what a huge difference pain can make because it profoundly affected me. Indeed, pain affects me in all sorts of ways I failed to notice when it was bad, like quality of sleep. I did 13 years bone on bone with an arthritic knee and when I had a replacement the rehab took me a fair while. It's only now, a year out, that I've suddenly noticed how much less pain there is and how much clearer my brain is. I'm a lady of a certain age so some of my brain fog was also menopausal - like you I kept a diary and went to the doc's about it - some has been ameliorated over the last year by hrt, some by less stress (husband has nearly retired, son is older, father died peacefully of Alzheimer's, watching him suffer was very tough especially watching mum suffer with him as they were very close). with less pain, less stress and only one parent with dementia I am a different human being.

I really, really hope you discover that this is down to levels of stress and pain although to be honest you'll only really know if one of the causes drops off a bit. Best of luck and god bless. I hope sharing my experience with you helps you with yours. This is a lovely forum and the people here are very supportive xxx

 

[MTM]

Update -
I have my appointment with the memory service Nov 10th.
I guess I will get the result of my CT Scan and any assessments they do (though I imagine I should do 'well' on those... My issues tend to be organisation, working memory/distraction and some perception issues.
I know it's unlikely to result in a clear picture but I will be a step closer to understanding what is going on, maybe.

That's great news. I hope you get some answers that are useful. All the best, MTM

 

[Eogz]

That’s good news @Eogz. I’m glad you’ve got the appointment. I hope someone will be able to attend the appointment with you. I know how hard it is to take in what’s said at medical appointments and another pair of ears can be useful. I’m not sure if that’s possible re Covid restrictions of course.

Hi,

Yes my partner is coming with me, it's only the 1st visit so I'm not expecting much. But I have done my research on what to expect. Can't help myself, I like to know these things.
Thanks for your reply.

 

[Eogz]

I just wanted to say, one, I think you are doing exactly the right thing in raising your concerns and being aware. The diary sounds great. Going into this with your eyes open is surely the best plan for you and those who love you.

Second, you mention pain. I wanted to flag up what a huge difference pain can make because it profoundly affected me. Indeed, pain affects me in all sorts of ways I failed to notice when it was bad, like quality of sleep. I did 13 years bone on bone with an arthritic knee and when I had a replacement the rehab took me a fair while. It's only now, a year out, that I've suddenly noticed how much less pain there is and how much clearer my brain is. I'm a lady of a certain age so some of my brain fog was also menopausal - like you I kept a diary and went to the doc's about it - some has been ameliorated over the last year by hrt, some by less stress (husband has nearly retired, son is older, father died peacefully of Alzheimer's, watching him suffer was very tough especially watching mum suffer with him as they were very close). with less pain, less stress and only one parent with dementia I am a different human being.

I really, really hope you discover that this is down to levels of stress and pain although to be honest you'll only really know if one of the causes drops off a bit. Best of luck and god bless. I hope sharing my experience with you helps you with yours. This is a lovely forum and the people here are very supportive xxx

Thanks for that, I have considered that pain and my early age related hearing loss may have something to do with it.
This is really to rule out what it could be, so making the journey to getting to the bottom of it very long.

Thanks for the reply and yes, it's a lovely forum.

 

[Sarasa]

Hi @Eogz, glad your partner is going with you. I am severely deaf and though I often think I've 'got' what is being discussed I can see from people's reactions I've missed a vital bit of what they've said. My husband calls himself my 'hearing husband' a bit like a hearing dog, and after a real struggle with my mum in A&E last week I realise I really do need him on hand to act as an interpreter in tricky situations.

 

[Eogz]

Hi @Eogz, glad your partner is going with you. I am severely deaf and though I often think I've 'got' what is being discussed I can see from people's reactions I've missed a vital bit of what they've said. My husband calls himself my 'hearing husband' a bit like a hearing dog, and after a real struggle with my mum in A&E last week I realise I really do need him on hand to act as an interpreter in tricky situations.

Oh yes, I don't think my dodgy hearing helps at all.
She did come with me, which was good, the nurse was excellent though and very clear with her communication.
I think I have a hearing partner too, though her tolerance of my hearing is changeable at times. Ha.

 

[Eogz]

Post appointment update:

Well I went to my appointment.
They are going to discuss me at their next MDT, it will be decided whether to send me to the Neuro Psychologist or to seek further scans MRI or PET.
I aced the Neuro tests, which I like of thought I would do, got the address wrong slightly and struggled with one of the tasks (name things starting with P not places or people, all's I could think of where places and people).
Nothing was obvious on my CT Scan, but the report was general not a dementia focused one, so they are asking for another report.
So no clearer than I was than before the appointment but it was only the 1st one.
I'm not expecting any answers at this stage, what does help is that they are taking my concerns forward and taking me seriously. That's all I wanted, I keep worrying that because my symptoms are mild, then I'm worrying about nothing. But it is about change rather than what happens and the change is clear.
So all in all a good result and we will see what happens.
If people are keen I will keep this going to to talk about the process of diagnosis or otherwise from the perspective of someone who is aware of what is going on. ?
I say aware but I might be over reaching myself. ?

 

[Eogz]

A turn up for the books, I got a call from the nurse who assessed me yesterday.
She has managed to get my case heard and I've been allocated to a specialist, he will want to see me after an MRI and do some further Neuro testing.
He will then decide whether a further move to the Neuro Psychologist will be suitable, though the referral is in for them too.
It caught me a little bit, I was torn between worrying that they wanted to get me seen so quick, there was nothing clear on the CT Scan and thinking that they probably got a little excited as they don't get many young people (51, though in Dementia years I'm a teen... Ha).
Well you can't fault the NHS, when they move, they move.
I'm going to keep this thread going, it'll be a bit of reflection for me.

 

[Eogz]

A turn up for the books, I got a call from the nurse who assessed me yesterday.
She has managed to get my case heard and I've been allocated to a specialist, he will want to see me after an MRI and do some further Neuro testing.
He will then decide whether a further move to the Neuro Psychologist will be suitable, though the referral is in for them too.
It caught me a little bit, I was torn between worrying that they wanted to get me seen so quick, there was nothing clear on the CT Scan and thinking that they probably got a little excited as they don't get many young people (51, though in Dementia years I'm a teen... Ha).
Well you can't fault the NHS, when they move, they move.
I'm going to keep this thread going, it'll be a bit of reflection for me.

I had my MRI yesterday.
Now, I'm usually or have been a relatively resilient person, I used to be able to take most new experiences with a pinch of salt.
The MRI was different. I've had one before on my back, this time my head was placed into a holder, ear plus inserted and foam packed at the sides to prevent movement. All fine, then a plastic cage was put in front of my face.
I was ok, went in the machine and I had rising anxiety... I never get anxiety over stuff like this. I managed it with breathing well and calming myself, the desire to press the panic button was really huge. But soldiered through it.
The radiologist said they would do one scan (10 mins, which was great I was expecting 30 mins) and may have to do another. Which they did after a pause.
I asked afterwards and they explained that first was a whole scan with the second to specific part of the my brain, temporal lobes.

Funnily enough the experience really knocked me back and the day was done in terms of my ability to get complex tasks done. I struggled with emails and other stuff related to work.

I know that my resilience to things is changing a little, driving at night is harder and those odd times familiar places don't look right are constant nuisances. So it would make sense that my ability to manage new experiences has changed a little as well.

I'm not saying that I definitely have dementia, but I know that something is going on in my brain and with it, I need to adjust and make do as best I can.

Blood and Urine tests later today, which means a Neurology appointment in the New Year. Perhaps even some answers.

 

[Shedrech]

It's good the scans have been done and that they took the time to explain the process
Best wishes for the New Year

 

[Peppa1963]

Hi,

Wow it sounds like you’re really going through it! You are doing all the right things. The diary etc is a must. It can take an awful long time to get a diagnosis if in fact you do have early dementia. Some of the things you describe happen during the menopause. You don’t say your sex so you can rule that out if necessary, otherwise HRT could be a useful starting point. An LPA for both finance and welfare can be done easily online for a fraction of the cost. It takes 3 months to come through. The memory clinic is usually the first port, they will refer you for a CT scan, but you have one scheduled. That will show any shrinkage etc age related deterioration. Hang on in there you are doing brilliantly, facing up to a potential issue maybe the hardest part. Good luck

 

[Eogz]

Hi,

Wow it sounds like you’re really going through it! You are doing all the right things. The diary etc is a must. It can take an awful long time to get a diagnosis if in fact you do have early dementia. Some of the things you describe happen during the menopause. You don’t say your sex so you can rule that out if necessary, otherwise HRT could be a useful starting point. An LPA for both finance and welfare can be done easily online for a fraction of the cost. It takes 3 months to come through. The memory clinic is usually the first port, they will refer you for a CT scan, but you have one scheduled. That will show any shrinkage etc age related deterioration. Hang on in there you are doing brilliantly, facing up to a potential issue maybe the hardest part. Good luck

Hi Peppa,

I'm a 51 yr old bloke, so the Menopause definitely isn't a problem.
Yep, I'm keeping a record of symptoms still, nothing is changing directly.
A CT scan was done but with a general report, so the memory service asked for it to be redone with a dementia focused report.
I also had an MRI before Christmas so now waiting for the Neurology appt. I have a specialist and a referral to the Neuropsychologist as well.
It's all happening, slower than I would like but I do get the process isn't quick.
I'm just keeping my diary going and recording the symptoms.
Thanks for your supportive message.

 

[Peppa1963]

I do hope you have supportive family or friends around you, I am sure you feel quite frightened. Wish you all the best.

 

[Eogz]

I have a very supportive partner, she is more scared than me I think.
We've already made some plans for the future, financial security etc, LPA's (though not done yet).
I'm a little worried, yes, I can chart a decline, the only good news is that, if it is something degenerative on the brain, I have caught it quite early.
So time isn't of the essence, the research I have done does limit the possibilities (though MS is still possible as are a couple of other things), it's dependent on what the Neurologist says is on my scans.
Atrophy of the brain would indicate something degenerative.
I'm going to post my results on this thread either way, the one things missing for me when I was concerned was a lack of information for someone experiencing that mild/subtle issues and what it could mean.
Thanks again for your message.

 

[Eogz]

So whilst waiting for the Neurology appointment to see about the results of my scan (MRI) I've gotten an appointment with the Neuropsychologist.
The letter details that I will be having tests and they will discuss further appointments. It also states that my scan will discussed at another appointment.
Whilst I'm grateful that things are moving forward and our wonderful NHS provides the service, I just want to know if there is something odd on my scan.
It seems daft and really ungrateful but the not knowing is torturous.
I'm just venting my frustration.
I don't have any severe symptoms, everything is quite low key, I go days feeling ok without anything too odd happening and then something does.
The foggy days and the days things go wrong I feel my concerns are valid.
The days I am ok I then start to doubt myself.
Daft and ungrateful I know.
I guess I'll know more next Friday.
I'll post an update of what happened at the appt. I don't know if this is helpful bit its helping me to put things down and just express my feelings.

 

[Woo2]

I don’t think it’s daft or ungrateful @Eogz you clearly just want to know the results as most of us would , they are doing lots of tests to I presume rule things in or out and to be as clear as possible before giving you any feedback . It is def helpful to others being able to read your posts, glad it helps you too .

 

[canary]

Neuropsychology testing is a quite common test in dementia diagnosis - especially in early onset. They would probably have been requested at the same time as the scan. I think the the bit saying that the results of the scan will be discussed at another appointment is a standard clause because its the doctor that has to give you the results - and they probably dont have the results anyway - so wanted to explain that they cant give you the results at that appointment. It doesnt mean that they have necessarily found something "off".
xx

 

[Eogz]

Thanks Woo2 and Canary, I appreciate your replies.
Yes I get the need for testing and a more intensive need due to my age.
It's one of those odd feelings knowing something is wrong but not knowing what.
I have a varied and long list of symptoms, though like I said all quite low key. A momentary lapse of where is my house?... 2 seconds later... Oh it's there etc.
They are a worry but then I am fine.
I really appreciate the chance to express myself and just talk, I don't want to further worry my partner, whilst a rock and a star she worries about this very much and if we go on about it, this can be disturbing. Of course I don't then share anything with the world, you don't want to be the moaner about things like this to everyone.
So this helps, the forum is ideal for me to just go blegh and get it out there.
Thanks again for your understanding.