Given initial diagnosis of early onset Alzheimers

[nothingcomplicated]

Hi everyone, my name is Jill and I've only just been given an initial diagnosis of early onset Alzheimers, i'm 51

It's come as a huge shock and I've been told that to get a 100% positive diagnosis I would be referred to a Research & Development Team for them to do further tests and a PET scan. After hearing nothing, i rang them on Friday and they said that this wouldn't happen and that I would just pick a trial that would be of interest to me !

I'd just like to know if anyone else has been in the same boat and where they went next to get the 100% diagnosis ?

I'm not in denial but there are still so many unanswered questions and this is a HUGE life changer. I've started taking Donepezil 5mg which is being increased shortly as if it turns out not to be Alzheimers then they won't do me any harm.

Hope I haven't waffled on too much.....

 

[BazArcher]

Hi Jill
Not sure what the real procedure is for getting diagnosis as everyone seems to be different depending on area, but i'll tell you how we got my OH thru the system.
Began with me getting worried over her memory about 5 yrs ago got fobbed off with literally everything from one of our local doctors inc marriage problems and time of life OH is now 50 so was 45 ish when I first noticed.
3 yrs ago major thing took place at OH's workplace long story ,short version dismissed for inappropriate behaviour and subsequently going to doctors with the story this time however Doc was different and thankfully clued up so we were passed over to local memory clinic.
After a few tests and mri they said OH had FTD with behavioural issues !! yeah right I knew that bit . from there it was onto Addenbrookes and Prof Rowe who did a lot more tests/mri and lumbar puncture for gene testing, and finally we got the result which is now FTD. That was a year ago so you can see it does take time sadly.
Its a long hard journey just to get a result I wish you nothing but the best, be strong keep smiling if possible and buy dentures cos some people in these places will surely make you grind your teeth......

 

[nitram]

Hope I haven't waffled on too much.....

Certainty not.

You are not in denial and articulate.

The only 100% positive diagnosis of Alzheimer's is by postmortem.

As you say taking Donepezil will not do any harm, transient adverse reactions don't really matter.

Assuming problems other than a degenerative brain condition have been excluded by blood tests you need to think about future support.

My advice is to be open about your condition with family/friends, accept all offers of support and carry on living.

 

[LynneMcV]

Hi Jill

In my husband's case he was initially put through blood tests, ECG, EEG and MRI tests whilst being referred to a consultant at the Memory Clinic.

Those initial tests ruled out other possible reasons for my husband's cognitive issues. He was still going through a lengthy analysis by a neuropsychologist to check for any other causes when the consultant announced that she was confident enough not to wait six months for that analysis to complete.

Based on what she had seen and heard for herself during their appointments, his performance in the MMSE tests, and the longer Addenbrookes test, she knew that there was enough evidence to suggest dementia.

She gave him an initial diagnosis of 'unspecified dementia' and started him on donepezil immediately rather than wait six months for the neuropsychology report to come through. He was 58.

She made the right choice because the neuropsychology report didn't throw up anything new as a possible cause.

One thing I did learn is that defining a specific category of dementia can be a long and difficult process. Often, it is only as the years pass and more symptoms arise, that it becomes clearer - and even then it might not be 100% accurate.

In my husband's case, the first four years saw 'unspecified dementia ' continue to be written as the diagnosis in his medical records. It was only when we entered 2017 (five years since initial diagnosis) that Alzheimer's started to appear as his written diagnosis. To be honest, it wouldn't surprise me in the slightest if, in the future, the type of dementia changes to something else.

The important thing is that he was started on the necessary medication right from the start to give him the maximum benefit and I am pleased to see that you have also been started on donepezil too.

After the initial diagnosis of unspecified dementia five years ago, my husband attended reviews at the Memory Clinic every 6mths to chart how things were going. These regular assessments are what helped plot a path towards the current diagnosis of Alzheimer's.

 

[nothingcomplicated]

Thank you for your replies.

My OH and I have only been together just over 3 years which makes things harder for me as he hasn't signed up for this, and i know nor have i, but I kinda feel a bit guilty

The Consultant Psychiatrist has said that I could have further investigations but I said that I didn't want anything that would provide ambiguous results.

At this moment in time I have problems remembering names, words and recent events, it's very frustrating and scary, the fear of the unknown.

I've been open with work and they know I can't tell them anything else at the minute. I want answers but doesn't look like I'm going to get them easily...

 

[Nameless]

My husband received his diagnosis by first going to his GP who referred him to the memory clinic for psychological and neurological testing. His blood got tested for just about everything. He had an MRI and after that he had 2 PET scans (one was in a trial). He received his diagnosis after 3 months.

 

[mancmum]

Just to pick up on what you said about your OH didn't sign up for this. Possibly not but no one can predict the future. I remember a night spent with a dear friend agonising over whether she should continue relationship with someone who she found had made several suicide attempts. She did. She didn't know then that he would be the one caring diligently and compassionately for her when she had terminal brain cancer only a few years later. Live and enjoy the moment. Simplify life where you can to stand you in good stead for the future.

 

[Beate]

In a way he has though - if you are with someone you make a commitment to them. OH and I weren't married so we never officially did the "for better, for worse, in sickness and in health" vows, but I still thought they were applicable, and if someone leaves just because of an illness, that doesn't show strength of character imho. Sure, no one has duty of care for another human being, but if you love someone you try to deal with it. It could have been him not you, so don't feel guilty for an illness you're not responsible for.

 

[nita]

The Consultant Psychiatrist has said that I could have further investigations but I said that I didn't want anything that would provide ambiguous results.

You say you don't want further investigations but have had all the tests to rule out an illness other than dementia - blood tests that could point to a thyroid or vitamin B12 deficiency, for example? There are other illnesses that can cause you to have memory problems. I wouldn't rule out having other tests to establish the problem unless the doctor is reasonably sure of your diagnosis.

I would reiterate what others have said and get whatever help is available as soon as you can. Try to establish some outside links so that you are not completely reliant on your OH if things do progress.

 

[john51]

Hiya

I got my diagnosis about 4 years ago at 51. Mine is vascular dementia. Like everyone else it took a long time and we struggled to be taken seriously. I was a teacher. Having got a diagnosis and the consulant became supportive and a supportive union I got early retirement and later on PIP. that's all great. Health care support the GP is great with symptoms and other things with a clear diagnosis. Apart from that we feel we've been sent away to get on with it.
The most important thing we've found is learning the new normal and working with it.

 

[lootalot]

Hi
I'm paul 46 and got diagnosed from the neurologist that i have Alzheimer's i have had lumber puncture errmm i forget the name but its a brain scan blood tests exams and got diagnosed within a year i am on tablets called galantamine i dont know if anyone knows of them but doctor said it will slow it down for me i have a ecg every month before they up the dose i only have one more to go this month thank god. So maybe you can get your full diagnoses faster and hope all is well good luck for the future

 

[nita]

Hi, Paul. Sorry you have had this diagnosis, but glad you are getting some treatment. Galantamine is one of the drugs used: other people may be on Donezepil (Aricept) or Rivastigmine (Exelon). They are all part of the same class of medication.

I expect they are checking that your heart is OK with these tablets. If you only have one more test then they are probably all right for you to take.

 

[Brookeden]

Im waiting for a memkry clinic appointment my gp referred me after telling me my ct head results. They were frontal lobal atrophy. My thyroid blood test result and alt are worse than normal. Could my brain of atrophied because of this being the reason and not early onset dementia, I'm 49 years old post menopausal. My dad and his aunty both had dementia and someone else on my dads side.could it be schizophrenia my brother is on lifelong medication for that. Imwonder if im borderline or something... I usually am borderline for most tests and I have bad side effects on medication. Im so damn confused. I know im not alone in this, but I still try to take care of my children even though they are adults now, two of them live at home and the other one is married but needs help looking after her three my grandchildren. Im missing out because of my health because I have mobility and pain issues too as I had to stop taking codeine and diazepam. I seem to be controlling my mood pretty good externalkybanyway and my sats are usually at 98 but my bp is slightly high. Like I say borderline. I do t know what to do. 7 dont want to go to the dr because when inwas on the oainkillers they made me go in every week and it feels like they think im a malingerer going so often or something.one 8f them tells me im healthy I guess be didnt see the ct scan results and another tells me im going to get demntia arggh im going to stop looking online for today or at keast a while be ause I want to see 7f any8ne replies who can tell me if its dementia or not and how long is it befor I willmee the memory clinic from the dr referring me.

 

[Lou16]

Hi everyone, my name is Jill and I've only just been given an initial diagnosis of early onset Alzheimers, i'm 51

It's come as a huge shock and I've been told that to get a 100% positive diagnosis I would be referred to a Research & Development Team for them to do further tests and a PET scan. After hearing nothing, i rang them on Friday and they said that this wouldn't happen and that I would just pick a trial that would be of interest to me !

I'd just like to know if anyone else has been in the same boat and where they went next to get the 100% diagnosis ?

I'm not in denial but there are still so many unanswered questions and this is a HUGE life changer. I've started taking Donepezil 5mg which is being increased shortly as if it turns out not to be Alzheimers then they won't do me any harm.

Hope I haven't waffled on too much.....

I’m so very sorry to hear of this. My grandma was diognosed at the memory clinic at our local hospital, she was then put on tablets (donepezil) but they didn’t agree with her and gave her nightmares she then went onto patches (rivmastigmine) which was better for her.
Best wishes
Lou xx

 

[canary]

Hello @Brookeden This must be a very worrying time for you.
Im afraid that no-one here can make the diagnosis of dementia as we are not doctors, just people who have dementia or care for someone who does.

If the scan shows atrophy in your frontal lobes then there is a problem, but it will need the doctor to look at the results and decide what is causing it. Im glad you have got an appointment with the memory clinic. Do mention about your family history if you can as it may be important.

 

[PJ]

Hi everyone, my name is Jill and I've only just been given an initial diagnosis of early onset Alzheimers, i'm 51

It's come as a huge shock and I've been told that to get a 100% positive diagnosis I would be referred to a Research & Development Team for them to do further tests and a PET scan. After hearing nothing, i rang them on Friday and they said that this wouldn't happen and that I would just pick a trial that would be of interest to me !

I'd just like to know if anyone else has been in the same boat and where they went next to get the 100% diagnosis ?

I'm not in denial but there are still so many unanswered questions and this is a HUGE life changer. I've started taking Donepezil 5mg which is being increased shortly as if it turns out not to be Alzheimers then they won't do me any harm.

Hope I haven't waffled on too much.....

Hi Jill how are you doing? I was just reading about your diagnosis of early onset & wondered if you minded me asking you what were your initial symptoms?
I’m currently waiting for my spect scan 6/3 when I hope to finally get some answers. I’m also 51 & understand hormones can also cause memory problem but it’s more than that.
Thank you for your time.