Not getting any better

[Dreamin1]

Hi everyone,

Some of you might remember I posted a few weeks ago regarding my mum and her memory problems.
Just some brief historical info for those who haven’t read my past post.
Mum has been
-forgetful
-paranoid
-not really eating
-not changing her clothes
-repeating herself all the time
-appearing quite confused and dazed
-worrying about people stealing her stuff
-doing poorly on all her memory test
-has had counselling no real change
-general appearance has gone down hill
-doesn’t know what day month or time it is

*MRI has come back clear apart from a small mengioma which apparently is nothing to be concerned about as reported by doctor, but may have a follow up to make sure it’s not growing etc, but they reassure me that no signs of dementia
*also had bloods done and they have all come back clear as well.
*currently on antidepressants just started them

So I am getting concerned regarding what next? I have spoken to the mental health team and her lead worker says she finds it strange because my mum is behaving like she has dementia with all the signs but MRI is clear. She says that she will speak to the consultant on the team and find out if there anything else that can be done.

I was just wondering if anyone has experienced anything like this and what was your outcome or anything else that I’m not thinking of….I would be so grateful.

The good thing is she remembers all of us and is really happy to see her grandchildren and when she sees us as a family she is happy, so we are trying to spend more time with her to see if it makes a difference.

Thanks for reading x

 

[canary]

I think my OH is very similar @Dreamin1
He too has symptoms of dementia (plus other symptoms), but scans are all clear
I have quite a long thread about it which is here if you want to read about it.

https://forum.alzheimers.org.uk/threads/no-diagnosis-no-hope-of-a-diagnosis.129792/

I was advised to treat it as if it were dementia, but that is hard to do - I find myself constantly second guessing myself.

 

[Jaded'n'faded]

I don't understand this. My mother was diagnosed with dementia even though her scans didn't show it. The consultant went on her behaviour and whatever she said in conversation with him. I wasn't there but the consultant phoned me for a long talk then changed his original conclusion (vascular dementia) to mixed dementia because I explained how things had been worsening for several years.

Having said that, this isn't the first time someone has struggled to get a diagnosis because of a 'no-show' scan. Several people here on TP are stuck with this problem - I'm sure someone will be along to offer their advice...

If it walks like a duck and quacks like a duck...

 

[SERENA50]

Hi

Dad's scans revealed some shrinkage in his brain but he was discharged from the elderly care clinic with what they said was depression and low mood but we felt, probably like you that it was not that because the other things we were seeing did not seem 'right' and we have had to keep saying and keeping saying. We as a family think it is dementia of some sort. We have an appointment in May for some test results but actually what would that change? We see what we see and we are where we are.

I would see if the anti depressants help and if not we find keeping some notes of what we notice helpful when we speak to the doctor. If you have LPA for health and well being it can make things easier as we have found the doctor will also speak to us which is just as well because Dad says quite clearly he doesn't want to talk to them!

I think being alone and feeling lonely are also a factor sometimes not just for older people either. Dad definitely went down hill during the last few years and alot of his friends have passed away, add that to poor mobility etc , it could well be a mixture of a few things together. Would your mum maybe enjoy a carers cafe maybe? or meals on wheels type thing? to see someone different?

 

[lollyc]

I don't understand this. My mother was diagnosed with dementia even though her scans didn't show it. The consultant went on her behaviour and whatever she said in conversation with him. I wasn't there but the consultant phoned me for a long talk then changed his original conclusion (vascular dementia) to mixed dementia because I explained how things had been worsening for several years.

Having said that, this isn't the first time someone has struggled to get a diagnosis because of a 'no-show' scan. Several people here on TP are stuck with this problem - I'm sure someone will be along to offer their advice...

If it walks like a duck and quacks like a duck...

Our siutation was very similar. Mum had some small lesions on the scan, but something that many people her age would've had, and not shown signs of dementia. We were given a "non-specific" dementia diagnosis, based on her symptoms.

 

[Lawson58]

My husband was diagnosed in 2014 with atypical Alzheimer’s after three years of my concerns about his behaviour. He had scans, numerous medical tests, hours of neuropsychological testing and a series of discussions on my part with doctors, OTs etc and had a cardiac arrest at home 6 months prior to the diagnosis. The consultant was very vague about the result of the MRI, indicating that there was ’something’ that added to his reasons for making the diagnosis.

In the following years, my husband was deteriorating very slowly and eventually after a roller coaster ride for a few months and a massive switch in his attitude and behaviour, the consultant ordered a PET scan. The PET scan showed absolutely nothing so the consultant immediately said that my husband no longer had a diagnosis of Alzheimer’s.

In his report to our GP, the consultant stated that whatever was evident in the early MRIs was as a result of the cardiac arrest so was not considered significant. That of course was ridiculous considering the cardiac arrest occurred in the middle of the memory clinic assessment and ignored all the testing conducted by the other professionals.

But I am the lucky one, really lucky. Since the switch in personality a few months ago, my husband has been kind and considerate and we have not had a single disagreement. His physical health is failing, his short term memory is showing signs of deterioration and he is becoming more confused.

We have agreed that there is no point in further testing and would refuse to see the same consultant anyway. So for the moment, I keep my fingers crossed and hope that he doesn’t revert back to what he was.

I am sorry I don’t have any answers for you but the lack of diagnosis is not uncommon.