I'm new ... need advice

Truetome

New member
Jan 4, 2020
4
0
Hi,

First Happy New Year to you!

My name is Aneta and I’m 46 years old. I live in Ontario Canada. Yes I know this is a UK site. But there seems to be more information in EU than here in Canada. So I am reaching out for help here as well as with my local Alzheimer's Association.

4 years ago I had a CT scan that came back as frontotemporal atrophy inappropriate for age and suspected aneurism. Went through the testing gambit for clots and heart attack/stroke. Was told that since I am showing no symptoms of dementia, that i am fine.

I asked for another scan back in October as I am finding difficulty with words. Forming sentences, remembering names of objects, talking around a word to describe what I mean. I know this is normal, but it is now impeding my ability to communicate at work with customers and I find myself very frustrated and angry.

In November 2019, i had a MRI and the results came back :
Impression:
1. Mild to moderate bifrontal temporal atrophy again visualized. Differential is broad and include frontal temporal dementia, Alzheimer’s disease, versus prior injury. Please correlate clinically. Neurology consult may be considered.
2. There are few scattered T2/flair hyperintensities in the periventricular and subcortical white matter, slightly more than expected for patients age. These findings could be secondary to small vessel vasculitis, ischemic changes, migrainous changes, or sequela of previous injury.

I do not have migraines - Dr. asked me that right away.

She also made a referral to a hospital for a Neurologist consult. Then forgot to send it.

I am also waiting on a comparison between the two scans by a radiologist.

I am struggling with the results of the MRI and need help. Dr. took me off work the week before Christmas due to my lack of coping and NOT KNOWING! I need to know!! I can handle things better if I know.

I know there is little know about frontotemporal dementia and no cure or meds to slow the progress.
I need help with getting a good doctor that specializes in this and maybe some trials. Hoping I can skip the line of months waiting for a neurologist appt. (If my dr ever sends the referral)

I am way too young (self pity here) and from what I read, the younger the fast the onset and death.

So if it really is semantic frontal temporal dementia (self diagnosed thanks to Dr. GOOGLE - lol ) I need help sooner rather than later.

To add to this, I am POA for my grandmother with Alzheimers - no one else in my family has it. Grandma is turning 90 in a month and was diagnosed 3 years ago.

Thank you and hope to speak to someone soon.

Aneta
 

Cat27

Registered User
Feb 27, 2015
13,057
0
Merseyside
Welcome to DTP @Truetome
We do have several Canadian members here & hopefully they’ll be able to give you some tips about medical care there.
Please keep posting as you’ll get lots of support here.
 

Palerider

Registered User
Aug 9, 2015
4,160
0
56
North West
Hi,

First Happy New Year to you!

My name is Aneta and I’m 46 years old. I live in Ontario Canada. Yes I know this is a UK site. But there seems to be more information in EU than here in Canada. So I am reaching out for help here as well as with my local Alzheimer's Association.

4 years ago I had a CT scan that came back as frontotemporal atrophy inappropriate for age and suspected aneurism. Went through the testing gambit for clots and heart attack/stroke. Was told that since I am showing no symptoms of dementia, that i am fine.

I asked for another scan back in October as I am finding difficulty with words. Forming sentences, remembering names of objects, talking around a word to describe what I mean. I know this is normal, but it is now impeding my ability to communicate at work with customers and I find myself very frustrated and angry.

In November 2019, i had a MRI and the results came back :
Impression:
1. Mild to moderate bifrontal temporal atrophy again visualized. Differential is broad and include frontal temporal dementia, Alzheimer’s disease, versus prior injury. Please correlate clinically. Neurology consult may be considered.
2. There are few scattered T2/flair hyperintensities in the periventricular and subcortical white matter, slightly more than expected for patients age. These findings could be secondary to small vessel vasculitis, ischemic changes, migrainous changes, or sequela of previous injury.

I do not have migraines - Dr. asked me that right away.

She also made a referral to a hospital for a Neurologist consult. Then forgot to send it.

I am also waiting on a comparison between the two scans by a radiologist.

I am struggling with the results of the MRI and need help. Dr. took me off work the week before Christmas due to my lack of coping and NOT KNOWING! I need to know!! I can handle things better if I know.

I know there is little know about frontotemporal dementia and no cure or meds to slow the progress.
I need help with getting a good doctor that specializes in this and maybe some trials. Hoping I can skip the line of months waiting for a neurologist appt. (If my dr ever sends the referral)

I am way too young (self pity here) and from what I read, the younger the fast the onset and death.

So if it really is semantic frontal temporal dementia (self diagnosed thanks to Dr. GOOGLE - lol ) I need help sooner rather than later.

To add to this, I am POA for my grandmother with Alzheimers - no one else in my family has it. Grandma is turning 90 in a month and was diagnosed 3 years ago.

Thank you and hope to speak to someone soon.

Aneta

Hi @Aneta

I just read your MRI reported by the radiologist. I think you need to press you doctor to make a neurology referal ASAP as this is very specialist. I know you want answers, but a neurologist or neuroradiologist would be the best person to give you some answers.

Hope you get some resolution soon
 

RosettaT

Registered User
Sep 9, 2018
866
0
Mid Lincs
Welcome from me too.
This is the place if you feel the need to rant, feel sorry for yourself, need to get things off your chest or simply want to chat. I hope you make progress sooner rather than later with a further diagnosis. It is the waiting and not knowing I find difficult to cope with too.
 

Splashing About

Registered User
Oct 20, 2019
434
0
Hi Aneta
How horribly worrying for you and I imagine you’re going out of your head and googling lots.
First thing I’d investigate is whether there has been any change in between the two scans however MRI and CT are different modalities so might show differences just because of that. Nonetheless the radiologist should be able to compare and indicate if the frontotemporal atrophy has changed. (T2 flair comment is only relative to MRI so wouldn’t be reported in the CT scan so that is not ‘something new’)

It the scans are similar then it takes you back to the original scan which you said they said was fine in absence if symptoms. You now have symptoms...are these definitely dementia and not just busy life? I’m trying to not sound dismissive but I have days where I can’t remember things I’ve just been told and I’m word blind. Without news of the scan result you might accept this as part of being busy, tired or stressed.

The wording of the report 1. Mild to moderate bifrontal temporal atrophy again visualized makes me think it hasn’t worsened. I’d expect the report to note an. increase in that change if it had.

Regardless of all of my mitigating comments your scan has shown a worrying change in someone your age...and a neurology consultation would be helpful to give you answers
 

Truetome

New member
Jan 4, 2020
4
0
Thank you everyone for you posts. I’m waiting for the comparison between the two scans now. Problem is they were done in two different hospital networks that don’t share info between each other.

I am hoping it’s similar and it’s all “in my head” pun intended. Lol
 

Truetome

New member
Jan 4, 2020
4
0
I told my doctor I think I’d rather have my cancer back. Only a year and a half since I was told I was cancer free.

man i never thought i would ever wish a cancer diagnosis but I’d rather a fighting chance over this! Never been helpless. But that is how I feel right now. Just want to scream at everyone. Just very angry.

again thank you for the posts and links and amazing comments and suggestions. Thank you!
 

Truetome

New member
Jan 4, 2020
4
0
Hi Aneta
How horribly worrying for you and I imagine you’re going out of your head and googling lots.
First thing I’d investigate is whether there has been any change in between the two scans however MRI and CT are different modalities so might show differences just because of that. Nonetheless the radiologist should be able to compare and indicate if the frontotemporal atrophy has changed. (T2 flair comment is only relative to MRI so wouldn’t be reported in the CT scan so that is not ‘something new’)

It the scans are similar then it takes you back to the original scan which you said they said was fine in absence if symptoms. You now have symptoms...are these definitely dementia and not just busy life? I’m trying to not sound dismissive but I have days where I can’t remember things I’ve just been told and I’m word blind. Without news of the scan result you might accept this as part of being busy, tired or stressed.

The wording of the report 1. Mild to moderate bifrontal temporal atrophy again visualized makes me think it hasn’t worsened. I’d expect the report to note an. increase in that change if it had.

Regardless of all of my mitigating comments your scan has shown a worrying change in someone your age...and a neurology consultation would be helpful to give you answers
Thank you. I’m praying you are onto something!!!
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
Thank you everyone for you posts. I’m waiting for the comparison between the two scans now. Problem is they were done in two different hospital networks that don’t share info between each other.

I am hoping it’s similar and it’s all “in my head” pun intended. Lol
The scans surely belong to you and not the hospital so I would try and ask for them. These are about you and you have the right to have them in your possession and do what you need to do with them.