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Just starting on this ride...

Eogz

Registered User
Sep 9, 2021
36
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.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,663
0
Kent
Welcome to Talking Point @Eogz . There is no need to apologise for your long post you have given a very comprehensive summary of your concerns.

I think you are doing everything you can by keeping a note of where you think you are going wrong.

All I can suggest is you keep a detailed diary during 24 hours and log the time and date and then do another a couple of days later.

It took a year for my husband to get a diagnosis even though we asked our GP on a regular basis and had face to face appointments not hampered by covid.

He was treated for depression and other suspicions were eliminated before he was sent for a scan.

I can understand how frustrating it is for you especially if family members are noticing something happening.

There will be a lot of support for you here. Members are generous at sharing their experiences so I hope this will help.
 

Eogz

Registered User
Sep 9, 2021
36
0
Welcome to Talking Point @Eogz . There is no need to apologise for your long post you have given a very comprehensive summary of your concerns.

I think you are doing everything you can by keeping a note of where you think you are going wrong.

All I can suggest is you keep a detailed diary during 24 hours and log the time and date and then do another a couple of days later.

It took a year for my husband to get a diagnosis even though we asked our GP on a regular basis and had face to face appointments not hampered by covid.

He was treated for depression and other suspicions were eliminated before he was sent for a scan.

I can understand how frustrating it is for you especially if family members are noticing something happening.

There will be a lot of support for you here. Members are generous at sharing their experiences so I hope this will help.
 

Eogz

Registered User
Sep 9, 2021
36
0
Thanks @Grannie G,

Your reply was much appreciated and I will stick to a diary and keep record of my concerns. I don't have severe symptoms, they are all low key, but I know something is up.
Too many years working with people who have issues makes me more aware of my own.
Thanks again, the support is much appreciated.
 

DreamsAreReal

Registered User
Oct 17, 2015
156
0
@Eogz The things you’ve described sound very similar to what I call brain fog, mine is caused by side effects of a prescription drug. It could be any number of things, so not necessarily dementia. I hope it turns out to be something treatable, best of luck to you.
 

Eogz

Registered User
Sep 9, 2021
36
0
@Eogz The things you’ve described sound very similar to what I call brain fog, mine is caused by side effects of a prescription drug. It could be any number of things, so not necessarily dementia. I hope it turns out to be something treatable, best of luck to you.
Thanks for the reply, you may well be right. The only medication I take is a PPI Omeprazole, but I take it sparingly thought it's a necessary evil, I have sever GERD.
It does have a loose connection to cognitive issues, something I hadn't thought about until your reply.
So many thanks for that.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,279
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 have M.E & have similar cognitive issues
 

Eogz

Registered User
Sep 9, 2021
36
0
I have M.E & have similar cognitive issues
Hi, I'm open to it being anything at the moment.
The GP saying that it does reflect early stage cognitive issues spurred me on to looking around for info.
Sorry to hear about your ME, one of the little understood or empathised conditions. A colleague at work has ME and she struggles massively with it.
We've had some good chats about cognitive issues and she was the first person I disclosed my concerns to.
 

Violet Jane

Registered User
Aug 23, 2021
407
0
Could this be connected to the Menopause? You are the right age. A lot of women report brain fog / cognitive issues and find that HRT helps with this. Someone on another thread about young onset dementia talked about this.
 

Eogz

Registered User
Sep 9, 2021
36
0
Could this be connected to the Menopause? You are the right age. A lot of women report brain fog / cognitive issues and find that HRT helps with this. Someone on another thread about young onset dementia talked about this.
I'm the wrong sex though... 🤣
Regardless this gave me such a good chuckle this morning.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,279
0
Hi, I'm open to it being anything at the moment.
The GP saying that it does reflect early stage cognitive issues spurred me on to looking around for info.
Sorry to hear about your ME, one of the little understood or empathised conditions. A colleague at work has ME and she struggles massively with it.
We've had some good chats about cognitive issues and she was the first person I disclosed my concerns to.
I have M.E brain fog triggered by stress, tiredness, emotional upset & often feel as if I’m battling to get words out. Other days I’m fine 20+ years of being told I’m talking gibberish by folks who have no concept of an invisible disability
 

Eogz

Registered User
Sep 9, 2021
36
0
Update:
I'm doing my symptom diary, which is going well and throwing up some I hadn't really noticed.
I've had my second load of bloods done and a CT Scan.
The memory service rang today and told me they would get an appointment out to me within the next couple of weeks.
So it's just a waiting game now, I'll keep the diary going, it does help.
I'll let you know what the outcome is.
 

nita

Registered User
Dec 30, 2011
2,228
0
Essex
I just looked up the long term side effects of omeprazole and one is vitamin B12 deficiency. This can cause cognitive problems so maybe the doctor tested for this amongst other things.
 

Eogz

Registered User
Sep 9, 2021
36
0
I just looked up the long term side effects of omeprazole and one is vitamin B12 deficiency. This can cause cognitive problems so maybe the doctor tested for this amongst other things.
Hi,
Yes I read about this as well, it's a tough choice between not taking a PPI and carrying on.
My over active can lead to cancerous ulcers, I witnessed my Dad dying this way and others. So I stick with them for now.
I have early age related hearing loss too, which can also be an issue with cognitive issues.
So it's all very much a guess and case of it could be anything.
Hopefully the CT Scan will rule out Dementia, then it is a case of looking elsewhere.
I sometimes wonder if I am being over dramatic and then something happens, I forget to lock the front door, the car, I take a wrong turn on a route I know very well, I can't find a word or get stuck because I forgot the point, or I feel so exhausted come the early afternoon, because all day I have been reminding and coaching myself not to miss any of the above.
It's something, I just don't know what.
 

Countryboy

Registered User
Mar 17, 2005
1,665
0
South West
Hi Eogz first of all sorry to hear your having problems with memory however from my perspective it’s great to be reply to the you Eogz and not some relative, before I actually comment I want you to know my comments are based on my own experience of having a dementia diagnoses and living it with it for 22 years. o_O I now almost 79, I have also been a member here on TP for 16 years so you could read some previous posts.

Ok I was in a similar situation as you at age {56} I was first diagnosed with Alzheimer’s in 1999 obviously I argued the diagnoses was incorrect and didn’t accept it and tried to get it removed from my medical records neither GP or Consultant wouldn’t remove it , in 2003 I was sent for a PET brain scan 2004 a SPECT brain scan this showed I had severe frontal lobe damage and was told I had Frontal-temporal-dementia ok now I had to give up trying to get the dementia removed and star getting positive and carry on and live with dementia the best I could { because both my parents had dementia also mums sister and brother } although they were in their late 70’s and early 80’s I knew what to expect so I decided to continue working for a further 8 years until my retirement and did retire I continued driving and still drive today actually a couple weeks ago I was driving in Majorca.:cool::cool:

Ok Eogz what do you expect again speaking from my own experience when I was first diagnosed inn 1999 I was asked to take a new drug called Aricept I agreed {I’m still on them now only a cheaper version Donepezil } have they held back dementia progression well I would like to say yes so that’s the one nice positive side.

Now for the negatives depending on how you expect to live as a normal person going forward believe me you will need to be Strong willed because life as you know it will change once your diagnosed.

again my experience I had to defend my right to continue in employment in order to continue I need support of family my GP, Occupational Therapist Consultants at Hospital and Unison and Government Personal department and my Managers these meetings were monthly for about two years.

my worst battle’s was with DVLA bureaucrats :mad::eek: from 2001 to 2013 when they finally reinstated my full driving licence after my court challenge.

Eogz the only Positives for me was the Aricept in hindsight I would never have agreed to the dementia testing again please Note this is only my view Not advise on what you should do

Eogz if its a little difficult to understand this is living with dementia for 22years :):)
 

Eogz

Registered User
Sep 9, 2021
36
0
Hi Eogz first of all sorry to hear your having problems with memory however from my perspective it’s great to be reply to the you Eogz and not some relative, before I actually comment I want you to know my comments are based on my own experience of having a dementia diagnoses and living it with it for 22 years. o_O I now almost 79, I have also been a member here on TP for 16 years so you could read some previous posts.

Ok I was in a similar situation as you at age {56} I was first diagnosed with Alzheimer’s in 1999 obviously I argued the diagnoses was incorrect and didn’t accept it and tried to get it removed from my medical records neither GP or Consultant wouldn’t remove it , in 2003 I was sent for a PET brain scan 2004 a SPECT brain scan this showed I had severe frontal lobe damage and was told I had Frontal-temporal-dementia ok now I had to give up trying to get the dementia removed and star getting positive and carry on and live with dementia the best I could { because both my parents had dementia also mums sister and brother } although they were in their late 70’s and early 80’s I knew what to expect so I decided to continue working for a further 8 years until my retirement and did retire I continued driving and still drive today actually a couple weeks ago I was driving in Majorca.:cool::cool:

Ok Eogz what do you expect again speaking from my own experience when I was first diagnosed inn 1999 I was asked to take a new drug called Aricept I agreed {I’m still on them now only a cheaper version Donepezil } have they held back dementia progression well I would like to say yes so that’s the one nice positive side.

Now for the negatives depending on how you expect to live as a normal person going forward believe me you will need to be Strong willed because life as you know it will change once your diagnosed.

again my experience I had to defend my right to continue in employment in order to continue I need support of family my GP, Occupational Therapist Consultants at Hospital and Unison and Government Personal department and my Managers these meetings were monthly for about two years.

my worst battle’s was with DVLA bureaucrats :mad::eek: from 2001 to 2013 when they finally reinstated my full driving licence after my court challenge.

Eogz the only Positives for me was the Aricept in hindsight I would never have agreed to the dementia testing again please Note this is only my view Not advise on what you should do

Eogz if its a little difficult to understand this is living with dementia for 22years :):)
Thanks for the extensive reply, it was much appreciated.
You have been through the mill and I understand what you are saying about a diagnosis.
To be honest I don't want a dementia diagnosis, I'm crossing my fingers for Mild Cognitive Impairment.
I know there is something wrong, it's not severe by any stretch but does impact on home a little and work work.
So a diagnosis of whatever this buggeration is would help as protection, in work (reasonable adjustments) and to make sure I was taking all the steps I need to delay worsening of things, they are getting worse but only very gradually. Symptoms started 3/4 years ago and have gradually gotten worse.
I'm hoping that it's not the big D, but I'm a realist and would rather know what I am facing, including the hardships that come with that, I then know my next steps in prepping for the future. LPA's in place, advanced statements etc etc.
I'm keeping a diary of what is going on and using that to understand any patterns.
Hopefully I'm doing the right thing, but I will take your experience into account and go from there.
Hopefully they've moved on a little in terms of early stage management of these things.
Thanks again and I really appreciate your candour.
 

Violet Jane

Registered User
Aug 23, 2021
407
0
Picking up on post #16, I think that it’s really important to address your hearing loss, whatever diagnosis you receive. Hearing loss makes communication more difficult whether or not you have dementia and if you have some cognitive issues then it’s even more important that you don’t end up ‘zoning out’ when you are in company because you can’t hear properly.
 

Eogz

Registered User
Sep 9, 2021
36
0
Picking up on post #16, I think that it’s really important to address your hearing loss, whatever diagnosis you receive. Hearing loss makes communication more difficult whether or not you have dementia and if you have some cognitive issues then it’s even more important that you don’t end up ‘zoning out’ when you are in company because you can’t hear properly.
Hi,

Thanks for the reply, I'm using hearing aids (although I dislike them very much) and have been for around two years now. So I'm good there, but suspect I need to have another hearing test as I think I am struggling a little with the hearing aids.
I do a lot of "What?" "I can't hear you" "Say that again"... Nothing new buyt frustrating to me and everyone I am doing it to. Ha.