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Just starting on this ride...

Eogz

Registered User
Sep 9, 2021
36
0
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

Volunteer Moderator
Aug 31, 2003
65,492
0
70
Dundee
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

Registered User
Jun 2, 2018
38
0
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

Registered User
Jun 2, 2018
38
0
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

Registered User
Sep 9, 2021
36
0
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

Registered User
Sep 9, 2021
36
0
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

Volunteer Host
Apr 13, 2018
3,945
0
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

Registered User
Sep 9, 2021
36
0
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

Registered User
Sep 9, 2021
36
0
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

Registered User
Sep 9, 2021
36
0
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.