How slowly can dementia develop? Is it possible 8 years from first early symptoms?

[Tricot]

I have finally returned to the neurologist I saw in 2017/18. In spite of the fact he wrote in his 2018 report to the memory clinic doctor "if symptoms worsen, refer for PET scan and lumber puncture with hypothesis of early Alzheimers¨ he has now refused to give me an MRI scan on the grounds that I am still autonomous (living alone and managing but with increasing difficulty) and progression was too slow for a diagnosis of dementia. He suggests instead I do meditation and find more creative outlets! I have enough trouble doing what's necessary day by day to keep myself and my animals going.

Symptoms have worsened steadily since that time. I wanted an MRI for comparison with the one taken in 2017 which showed 'moderately more white matter than expected for my age'. This is because I believe it might be white matter disease, also called cerebral small vessel disease, which shares many symptoms with dementia. Neither of these conditions have cures but I just want to know. So many years of symptoms and not knowing why. I'm so upset after waiting all this time for the appointment and feel no-one's listening.

From experience, can anyone here tell me if dementia symptoms can develop this slowly? A new development is just the last few months I can't stop eating and have put on 2 stone. No idea why. I have no impulse control.

 

[SeaSwallow]

@Tricot I am sorry to read that you felt that the appointment with the neurologist did not answer your questions. Some peoples dementias do develop more slowly than others. I wonder if it might help to speak with your GP to explain how you feel and also to discuss your increased eating.

 

[Tricot]

Thank you for taking the time to respond @SeaSwallow. I have an appointment with my GP who is not very helpful. The sudden compulsive eating is odd. Of course it's eating all the wrong things when I should be eating to help my brain as I was before.

 

[jay6]

@Tricot It's so hard to get help isn't it? We shouldn't have to keep on and on with G.P.'s before they listen. I tried to get my OH diagnosed for 3-4 years. In the end compared a CT scan of 2-3 years ago (after being hospitalized for fall and hitting head) to one 9 years previous, from a stroke. Haven't been able to get a more recent one. Gave up banging my head!
I think the speed does vary for person to person. From what I understand you can go for years with first stage.
Hope yours is very slow and you get to enjoy life the best you can.
I started a diary to look at the progress, maybe this could help?
Remember you aren't alone. Plenty on here in various stages. Hope it helps.

 

[Tricot]

Thank you @jay6. I began to think it wasn't dementia because it was so slow and have been researching cerebral small vessel disease which has lots of the same symptoms. But this sudden overeating has thrown a spanner in the works. I don't know what to think. I just know everything's getting worse. This morning I went shopping and was surprised to find ricotta cheese on my list, something I very rarely buy. Then I remembered I'd seen a recipe and had all the incredients except ricotta. What the recipe was for and where it is, I have no idea. Just know it was dead easy so I thought I'd have a go.

Good idea about the diary. In any case they say keeping a journal is good therapy. All the best to you and your husband.

 

[Weasell]

Hi @Tricot
I would be requesting a wegovy prescription to support me with the eating problem.
But there is a national shortage of the product so getting a prescription is no easy task.

https://www.accessdata.fda.gov/drugsatfda_docs/label/2022/215256s005lbl.pdf

I am not a doctor, but have heard feedback on the product.

 

[Tricot]

Thank you @Weasell. I've considered Wegovy. Here in France my BMI is not high enough to be considered for a prescription but it soon will be if I can't control my eating. I don't want to add to my health problems by becoming grossly overweight. I would be prepared to pay privately if it came to it but there's a shortage here as in the UK.

Have you heard good feedback?

 

[Weasell]

It is excellent.
To put it simply, it works.
An expert could make an educated guess as to which area of your brain is being compromised, causing the overeating.
How interesting would it be to see what wins? The Wegovy to stop the desire to overeat, or your problematic brain wanting you to overeat.
I would use this argument to ‘sell’ the idea to the consultant. As a sweetener I would offer to diary any changes I felt the Wegovy was making at the end of every day, and report back with the documentation!
Doctors love a bit of ‘evidence’!
I would make it clear you don’t expect the Wegovy long term but just as a tool to break the cycle.

 

[Tricot]

An expert could make an educated guess as to which area of your brain is being compromised

I'm finding I have to be my own expert and my educated guess goes to the prefrontal cortex of the frontal lobe!

I would make it clear you don’t expect the Wegovy long term but just as a tool to break the cycle.

It's my belief that this episode marks a deterioration in my condition, another part of my brain malfunctioning. If so, it's likely permanent. I do hope I'm wrong.

 

[Weasell]

I'm finding I have to be my own expert and my educated guess goes to the prefrontal cortex of the frontal lobe!


It's my belief that this episode marks a deterioration in my condition, another part of my brain malfunctioning. If so, it's likely permanent. I do hope I'm wrong.

I hope you are wrong too.
The reason I would tell the doctor it is just a tool to break the cycle, would have nothing to do with my optimistic personality! It would be because of trying to convince them the cost implications are not too high!

I will confess to being a goal post mover at times! Ask for a little, then get those goal posts moving! ( But it would be so nice if it was not necessary!)
well done for being so knowledgeable about your condition.

 

[Tricot]

A new development is just the last few months I can't stop eating and have put on 2 stone. No idea why. I have no impulse control.

Just an update. The compulsive eating has stopped as quickly as it started. Just like that. It's a great relief and one less thing to worry about. Now I've started the slow process of losing the excess weight. So easy and quick to put weight on and so hard and slow to get rid of it!

 

[canary]

So easy and quick to put weight on and so hard and slow to get rid of it!

Aint that the truth!
At least its coming off, even if slowly
xx