Not diagnosed just yet

Nonnajay

Registered User
Aug 3, 2022
26
0
Hello to all, (forgive me for this been long winded )

I am new to this forum but have been reading many of the posts.

I am 48 years young and turned to my GP after a few years of not been myself . So he has been on this journey with me from the beggining and has seen the changes in me become worse over time. He believes I have Alzheimer’s and sent me to a neurologist who says I’m to young to have it and then had me do a test with another person in which he asked me questions and said things I had to remember and to drawl a clock which I have been able to do my whole life into he asked me. I burst into tears because I had forgotten how to do it. I didn’t remember barley any of the things he asked me to repeat and it was just not a good experience. (I don’t have the results from that as yet but I’m sure it wasn’t good ?)

And then he sent me off for a mri a few months ago which came back clear except for the report said I have a basal ganglia calcification (I have no idea what that means) and it also said a possible iron disease.

I haven’t spoken to him yet about that mri or the tests I had to do because I just keep forgetting to make that damn appointment to go back and see him. (My daughter is going to make the app for me tomorrow ❤️)

So that’s the medical side . Now to about myself.

Slowly I have gotten worse with everything not just my memory. I forget everything and I mean everything in minutes from what I just talked about to what day it is . I am always stopping in conversation because I cannot think of a word to use , I’m literally forgetting words ? and this makes me feel so degraded and so stupid and I don’t like been this way at a. Infact it’s not me, this is not who I was , I feel like someone else has entered my mind and is taking over and it’s the most scary feeling and the most devastating feeling . My young children (I have 8 children , four adult ones and four young ones ) but my children are constantly helping me with words , when I say the wrong things which is every time I talk. They shouldn’t have to be doing this for their mother .

I say things that I completely don’t remember saying . I’m forgetting how to add numbers together and that’s something I was always very quick at doing , now I struggle if I can even do it .

I can watch a tv show and by the next day it’s al forgotten and I’m latch it again and not remember a damn thing and my 12 year old will say mum we watched that last night together .

I had to give up the course of my dreams that I waited to do till my youngest turned 9 and I had to give it up . I was starting to become a (omg I can’t remember what it’s called ??, well a counselled but I don’t remember the name of it I’m sorry , and well I just want r able to remember the things I was reading and I wasn’t taking it all in like I should of been and I knew then something was REALLY wrong with me so I was so heart broken I waited 30 years and then didn’t get to become a counselled after all that time .

I’m losing myself , I’m forget isn’t what my grandchild names are and calling them other random names and they live with me ?

I’m feel more and more I’m been oh she’s to the background. While this imposter takes over my brain and is taking away my once amazing memory . And yet I am starting to remember things from my past way better then ever before . It’s just so strange .

I don’t know if this sounds like Alzheimer’s but my doctor said he is pretty sure it’s early onset . But the neuro practically scoffed at the thought of it been that . But I know this ain’t me and I’m deteriorating slowly. It’s not MY mind anymore and I’m losing myself more and more .

I’m sorry for the long rant if you got this far , but I feel so alone and no one understands how isolating this feels so I found you all in this forum.

Does anyone know if any of this is a Alzheimer’s or dementia signs? Please be honest with me


Love and light
Nonnajay ?
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,000
0
72
Dundee
Welcome to the forum @Nonnajay.

Thank you so much for sharing your story with us. You must be exhausted with all that’s going on.

Although much of what you describe sounds like dementia it’s impossible for us to say. I’m sure the appointment your daughter had made will give you clarification.

Whatever the outcome please keep posting here. You will get lots of understanding and support on this forum.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hello @Nonnajay and welcome from me too.

As Izzy said, we cant tell you on here whether you have dementia or not, although the things you talked about do make it sound likely. Are you also getting problems with walking or becoming much more clumsy?

Your neurologist might suggest doing another type of scan which can sometimes show any damage more clearly. You might find it helpful to take someone with you when you next see the neurologist so that if you forget anything they can remind you - perhaps your daughter could go with you?
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
I wonder, could you get your daughter to keep notes of your memory problems and any other behaviours she finds strange/not normal for you? It would help for when you go back to see the doctor to include someone else's observations. And take your daughter to the appointment. Not only can she tell the doctor how you are (useful back up!), she will also remember anything the doc says that you may forget... :)

It's often the case that early onset dementia symtoms get overlooked because it is rare to have it so young but it's likely your symptoms could have a different cause, which may be fixable, so don't panic!
 

Nonnajay

Registered User
Aug 3, 2022
26
0
Oh no I wasn’t asking if you believe I have it , I was just asking if anyone knows if any of these are dementia symptoms. Those who have it would either understand what I’m going through or would not have a clue what I’m trying to explain about my new found way of living life ?

I am very aware no one on here can diagnose me , that would just be silly of me to even think so. But I was hoping someone who understands the symptoms of dementia might be able to tell me if any of mine are symptoms of dementia.

Yes indeed my daughter goes with me to every appointment for anywhere I go because once I got very panicked because I was standing inside a coles shop I have been to for years and suddenly didn’t recognise it at all and couldn’t remember how to get out of the shop and my daughter was with me and she too then realised this isn’t my mum. She is a disability carer and so she understands and is so very understanding with me. So I can’t go anywhere by myself anymore ?

I was trying to live in denial for quite some time until one morning I woke up and my granddaughter was playing with my phone and she said here you can have your phone back Nonna and I said it wasn’t my phone and I didn’t recognise it at all and even argued it wasn’t mine until my 12 year old came in and said “mum that is your phone”. The feeling that gave me literally terrified me so badly and I cried and cried . Forgetting your own belongings is a very scary feeling, infact it’s terrifying because I felt I was losing the only world around me I’ve every known and suddenly I’m ina. New place I know nothing about. It’s so much more then just forgetting , it’s a whole new way of life and one only I’m in on my own
And that’s just devastating for me
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hi @Nonnajay

No one who replied disbelieves what you say :)

We have all said that the things you mentioned could be dementia

Unfortunately, there are some other conditions that can give similar symptoms and we cannot say whether you have dementia or not.

Im glad your daughter is going with you to your appointments. It may help her to see the replies that you have had on here.

xxx
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
It must be very frightening for you (I would be concerned if it was me...) and yes, the symptoms you describe could be dementia.... however, there could be other causes. Due to your age, other causes are actually more likely, hence the statement from the neurologist you saw. But he/she didn't reject the idea as you were given various tests to do. These, plus the MRI results should give a better indication.

We have a few members here on TP who have dementia themselves but are admirably able to write about it - see the 'I have dementia' sub forum. Perhaps it would help to read some threads there too, to see if you recognise their experiences.

I had some similar symptoms about 20 years ago, in fact it's what got me researching dementia. Years later I recognised it in my mum, sadly. But my symptoms turned out to be due to early menopause, not dementia.
 

Nonnajay

Registered User
Aug 3, 2022
26
0
As I said above, I know no one can tell me if I have or haven’t got dementia. .

I was only describing what I’m going through because I can’t tell anyone else and this was the first place I came to but I’m sure there are others who may understand what I’m trying to share here.

I think I’ll leave this here as I am not after an answer or diagnosis , just some friendly understanding. My sharing was to get it all out as I haven’t done that before , and I wasn’t after a diagnosis.

Im terribly sorry if that’s all people are taking from my post as that wasn’t my intention of sharing a very private area of my life right now.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,000
0
72
Dundee
Please don’t leave here @Nonnajay.

You really are amongst people who will support and understand you. Take this as a misunderstanding blip. Please keep posting.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Hello @Nonnajay
A warm welcome to DTP

I'm sorry you feel misunderstood ... Please keep posting

I think maybe we're so wanting to help each other out that we tend to want to offer suggestions

your post reminds me that actually most members value most simply being listened to ... and we all want DTP to be somewhere that's safe to say what you need to and have a sympathetic response

It's so helpful for us all to have many different perspectives portrayed in threads, and you sharing your experience is really valuable

Stay with us

PS
Members sometimes have a long running Diary or Journal thread, so the purpose is clear to members .... maybe start such a thread yourself .... or we can change the title of this thread, if you wish, just get in touch
 
Last edited:

Dunroamin

Registered User
May 5, 2019
418
0
UK
@Nonnajay i have Alzheimers and have been posting on these forums for quite a while now, and have never been misunderstood. I am always treated with support and kindness. However, it is sometimes easy for me to misinterpret things or get the wrong end of the stick altogether.

Basal ganglia calcification is extremely rare (it is a build up of calcium in the basal ganglia) so expect several more tests and an inevitable delay in diagnosis. I have a friend in our Alzheimers group with Fahr's disease. It affects around 1% of the UK polulation, many medics have never heard of it, and clinical support and review is only available in London.

I empthasise with your frustration, fear and dismay at the changes in your capabilities, and your worries for the future. You are still you - just different - and seeing the world from a strange place. Please keep on posting. In the meantime, live in the moment and try to enjoy what you have. Not easy.
 

DreamsAreReal

Registered User
Oct 17, 2015
476
0
@Nonnajay Please don't go. I'm sorry if some replies have upset you, nobody here would want to deliberately do that but misunderstandings do occur sometimes. Stick around and keep reading posts that you feel are applicable or might be helpful to you and also the various articles on the Alzheimer's Society web site.
 

Nonnajay

Registered User
Aug 3, 2022
26
0
Hello @Nonnajay
A warm welcome to DTP

I'm sorry you feel misunderstood ... Please keep posting

I think maybe we're so wanting to help each other out that we tend to want to offer suggestions

your post reminds me that actually most members value most simply being listened to ... and we all want DTP to be somewhere that's safe to say what you need to and have a sympathetic response

It's so helpful for us all to have many different perspectives portrayed in threads, and you sharing your experience is really valuable

Stay with us

PS
Members sometimes have a long running Diary or Journal thread, so the purpose is clear to members .... maybe start such a thread yourself .... or we can change the title of this thread, if you wish, just get in touch
Thank you beautiful soul ?❤️?
 

Chocco

Registered User
Aug 9, 2021
215
0
Hello to all, (forgive me for this been long winded )

I am new to this forum but have been reading many of the posts.

I am 48 years young and turned to my GP after a few years of not been myself . So he has been on this journey with me from the beggining and has seen the changes in me become worse over time. He believes I have Alzheimer’s and sent me to a neurologist who says I’m to young to have it and then had me do a test with another person in which he asked me questions and said things I had to remember and to drawl a clock which I have been able to do my whole life into he asked me. I burst into tears because I had forgotten how to do it. I didn’t remember barley any of the things he asked me to repeat and it was just not a good experience. (I don’t have the results from that as yet but I’m sure it wasn’t good ?)

And then he sent me off for a mri a few months ago which came back clear except for the report said I have a basal ganglia calcification (I have no idea what that means) and it also said a possible iron disease.

I haven’t spoken to him yet about that mri or the tests I had to do because I just keep forgetting to make that damn appointment to go back and see him. (My daughter is going to make the app for me tomorrow ❤️)

So that’s the medical side . Now to about myself.

Slowly I have gotten worse with everything not just my memory. I forget everything and I mean everything in minutes from what I just talked about to what day it is . I am always stopping in conversation because I cannot think of a word to use , I’m literally forgetting words ? and this makes me feel so degraded and so stupid and I don’t like been this way at a. Infact it’s not me, this is not who I was , I feel like someone else has entered my mind and is taking over and it’s the most scary feeling and the most devastating feeling . My young children (I have 8 children , four adult ones and four young ones ) but my children are constantly helping me with words , when I say the wrong things which is every time I talk. They shouldn’t have to be doing this for their mother .

I say things that I completely don’t remember saying . I’m forgetting how to add numbers together and that’s something I was always very quick at doing , now I struggle if I can even do it .

I can watch a tv show and by the next day it’s al forgotten and I’m latch it again and not remember a damn thing and my 12 year old will say mum we watched that last night together .

I had to give up the course of my dreams that I waited to do till my youngest turned 9 and I had to give it up . I was starting to become a (omg I can’t remember what it’s called ??, well a counselled but I don’t remember the name of it I’m sorry , and well I just want r able to remember the things I was reading and I wasn’t taking it all in like I should of been and I knew then something was REALLY wrong with me so I was so heart broken I waited 30 years and then didn’t get to become a counselled after all that time .

I’m losing myself , I’m forget isn’t what my grandchild names are and calling them other random names and they live with me ?

I’m feel more and more I’m been oh she’s to the background. While this imposter takes over my brain and is taking away my once amazing memory . And yet I am starting to remember things from my past way better then ever before . It’s just so strange .

I don’t know if this sounds like Alzheimer’s but my doctor said he is pretty sure it’s early onset . But the neuro practically scoffed at the thought of it been that . But I know this ain’t me and I’m deteriorating slowly. It’s not MY mind anymore and I’m losing myself more and more .

I’m sorry for the long rant if you got this far , but I feel so alone and no one understands how isolating this feels so I found you all in this forum.

Does anyone know if any of this is a Alzheimer’s or dementia signs? Please be honest with me


Love and light
Nonnajay ?
Hi @Nonnajay
 

Chocco

Registered User
Aug 9, 2021
215
0
Hi@Nonnajay
How are you feeling today?

My husband has his assessment at the Memory Clinic today, it has been a struggle dealing with the changes in him in the last year.

I always read posts from people with dementia to try and help me understand more from his point of view.

When I read your post, I could have cried for you, the frustration and bewilderment of your situation came across so clearly.
You said that when you forget words, it made you feel degraded and stupid.

It helped me to remember that very wrongly, sometimes I treat my husband as though he is stupid and he must feel bad enough already. I will try much harder to be patient.

I have found this forum to be a life saver because there is so much compassion here - we are all going through similar experiences and can feel so alone with it.

Thank you for sharing your experiences so honestly, it has been a help to me for my situation xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
Hello @Nonnajay

I apologise in advance if this has already been discussed. I’ve been away from the forum with covid and missed a lot of information

I just wanted to ask if you have considered seeking a second opinion from a different neurologist. For the neurologist you saw to dismiss you because of your age shows how out of touch they are. There are many members here your age and younger and they too have struggled to be heard

It sounds as if you have a supportive GP and perhaps they will agree to a second referral for you.
 

Norrms

Registered User
Feb 19, 2009
5,631
0
Torquay Devon
Hiya @Nonnajay as a person living with dementia and someone who has been posting on here many years through thick and thin, please know are all always here to listen to you xxxxxxxxxxxxx
 

Nonnajay

Registered User
Aug 3, 2022
26
0
Hi@Nonnajay
How are you feeling today?

My husband has his assessment at the Memory Clinic today, it has been a struggle dealing with the changes in him in the last year.

I always read posts from people with dementia to try and help me understand more from his point of view.

When I read your post, I could have cried for you, the frustration and bewilderment of your situation came across so clearly.
You said that when you forget words, it made you feel degraded and stupid.

It helped me to remember that very wrongly, sometimes I treat my husband as though he is stupid and he must feel bad enough already. I will try much harder to be patient.

I have found this forum to be a life saver because there is so much compassion here - we are all going through similar experiences and can feel so alone with it.

Thank you for sharing your experiences so honestly, it has been a help to me for my situation xx
Hello there
Hi@Nonnajay
How are you feeling today?

My husband has his assessment at the Memory Clinic today, it has been a struggle dealing with the changes in him in the last year.

I always read posts from people with dementia to try and help me understand more from his point of view.

When I read your post, I could have cried for you, the frustration and bewilderment of your situation came across so clearly.
You said that when you forget words, it made you feel degraded and stupid.

It helped me to remember that very wrongly, sometimes I treat my husband as though he is stupid and he must feel bad enough already. I will try much harder to be patient.

I have found this forum to be a life saver because there is so much compassion here - we are all going through similar experiences and can feel so alone with it.

Thank you for sharing your experiences so honestly, it has been a help to me for my situation xx
Hello there Chocco

How did your husband go at that assessment today darling?

I think once I am diagnosed then I may be taken more seriously.

He has seen my decline in cognitive abilities over the last few years so he has been on this journey with me and knows me , the real me and not who I am becoming , which to me feels like a shadow. Of myself.

You are an amazing wife and even though I do not know you yet, I feel it . Your still with him and helping him and continuing to be there for him. That’s a saint in my eyes ❤️

But thank you for your lovely welcome and understanding ?❤️?
 

Nonnajay

Registered User
Aug 3, 2022
26
0
Hello @Nonnajay

I apologise in advance if this has already been discussed. I’ve been away from the forum with covid and missed a lot of information

I just wanted to ask if you have considered seeking a second opinion from a different neurologist. For the neurologist you saw to dismiss you because of your age shows how out of touch they are. There are many members here your age and younger and they too have struggled to be heard

It sounds as if you have a supportive GP and perhaps they will agree to a second referral for you.
Hello there Grannie ?

I didn’t even think of getting a second opinion OMG are WONDERFUL ? I really should do that and I think I will. He is a very unemotional kind of text book and by the book only kind of neurologist. I need a gentle ear and to be heard and not scoffed at because I am 48 and not 88.

I think I better start the looking for another neurologist game tomorrow .
 

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