Recent Diagnosis but is it right?

[Denman123]

I have just been diagnosed with Early Onset Alzheimers Dementia.This followed a session with a nurse at a Memory Clinic,a consultation with a specialist Doctor and then a SPECT scan and a CT scan.The scan results apparently support the diagnosis.

So my question is could the diagnosis still be wrong>I will ask for some blood tests to rule out anything that could mimic dementia but is there anything else this could be?

Does anyone have any experience of incorrect diagnosis?

Clutching at straws I suspect

 

[Saffie]

Hello Denman - I have caught up with your previous posts before coming here so that I can see what has been happening. I am really sorry that the diagnosis is one that you really didn't want. As others on your previous thread have said, the diagnosis of AD is not always a definitive one but more decided by ruling out other causes which is why a scan can be necessary and, I suspect, why you wish to undergo further tests. I am afraid that I have little knowledge here as my husband never had a scan at all, it was just decided that he had VD from his medical history. I hope someone will respond to this thread who has more knowledge about the accuracy of other forms of testing.
However, whatever the outcome, please keep coming back here as you will find lots of support and help. Very best wishes.

 

[zeeeb]

Perhaps genetic testing could help with a more difinitive diagnosis or not. There are 3 genes that show a firm genetic link. As with all diagnosis of Alzheimer's, its not 100%, only when autopsy is done is it 100%. Do you have family history?

You will know when the medication starts to improve things, or when the symptoms get worse. Never a nice discovery, but nothing really is with Alzheimer's.

My mums was confirmed to me when she went off aricept for 3 weeks, she fell in a hole big time, so that made me realise it was really real and that she was now dependant on the aricept to help keep her head above water and have a reasonably normal appearance most of the time in public.

 

[stanleypj]

Hi Denman, I can understand how devastating this news will be for you. My wife has Young Onset Dementia. It took leading experts 12 years to reach a diagnosis. If you read up about diagnoses on here you will quickly see that diagnosing dementia, and deciding which kind of dementia is involved, can be very difficult. Even scans are sometimes not conclusive.

One way to look at this - and I understand it isn't easy - is to regard the label you have provisionally been given as just that, a label. What they cannot know is how any disease you have may progress. There are examples of people being able to lead independent lives many years after diagnosis. This may be a more substantial straw than the notion of something that can mimic the condition - but that itself is not beyond the bounds of possibility.

 

[Barry]

Hi Denman
There is some very wise advise from other posts for you to follow here and I also still after 8 years of being told I have mixed dementia and with all the suporting scans still aske the same question is it dementia... some days I think not but then other days the reality really hits in, now I take each day as it comes and live in hope
Barry

 

[Bodensee]

I have just been diagnosed with Early Onset Alzheimers Dementia.This followed a session with a nurse at a Memory Clinic,a consultation with a specialist Doctor and then a SPECT scan and a CT scan.The scan results apparently support the diagnosis.

So my question is could the diagnosis still be wrong>I will ask for some blood tests to rule out anything that could mimic dementia but is there anything else this could be?

Does anyone have any experience of incorrect diagnosis?


Clutching at straws I suspect

Hi Denman,
What a terrible dilemma not knowing for certain if your diagnosis is accurate. From what I have read about AD and other neurological diseases it is only been possible in the past to have a difinitve diagnosis at autopsy, and others diseases such as prion diseases with a blood test.
I think if I had any doubts I would contact the Maudsley Hospital in London who are trialling the new NHS high tech imaging scans for people like yourself. This new fast track service is aimed at people like yourself with early symptons, from what I have read it appears that they are offering the very latest advanced technology screening to diagnose dementia related diseases. No harm in giving the helpline a ring, they are planning to roll out this new service across the country but at the moment I believe that it is only available in some areas. Worth a try for peace of mind as it is possible to be mis-diagnosed from the stories I have been reading in newspapers.

Another suggestion is to take the copies of your scans to a different specialist for a second opinion.

 

[nmintueo]

So my question is could the diagnosis still be wrong? I will ask for some blood tests to rule out anything that could mimic dementia but is there anything else this could be?

I don't have experience of misdiagnosis of Alzheimer's, though a quick search easily turns up articles suggesting that that's not uncommon - although in many cases it will still be some form of dementia. Late or no diagnosis is also common.

You "will ask for some blood tests" -- do you mean they haven't done any? Some blood work is routinely indicated in screening for dementia, so if it hasn't been done, I'd wonder why not.

NICE recommends routine haematology - and other blood tests - in the investigation of suspected dementia:

National Institute for Health and Clinical Excellence
CG42 Dementia: quick reference guide

Investigation of suspected dementia
Conduct a basic dementia screen at the time of presentation, usually in primary care. Include:
– routine haematology
– biochemistry tests (electrolytes, calcium, glucose, and renal and liver function)
– thyroid function tests
– serum vitamin B12 and folate levels.
...

http://guidance.nice.org.uk/CG42
http://guidance.nice.org.uk/CG42/QuickRefGuide/pdf/English


See also factsheet on this site:
Diagnosis and assessment
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=260

 

[Denman123]

thanks

I have just realised that the blood tests were done in May but I had forgotten!The results are negative for anything that could mimic AD

 

[Denman123]

Many thanks

Thanks for all your assistance it looks as if I may never really know but treating whatever is happening just as a label sounds good.I will be strating on Aricept this Friday and we will see how that goes.

In the meantime I want to get a second opinion - even privately - does anyone know of a good consulatnt in the North West that I might be able to contact

 

[Teri]

Hello Denmann, my name is Theresa. Doctors have not yet determined whether or not I have AD. I think your idea of a second opinion makes complete sense. I have seen numerous doctors, but they are reluctant to say AD because I am only 52 and have no family history. Cognitive tests show my processing speed is now extremely slow, as is my ability to learn new material. I was a teacher until 2 years ago when this became too much to be ignored.
AD is not a desired diagnosis. But if it is, do all you can to maintain your brain for as long as you can.
Good luck with your second opinini.

 

[MIKYPLUM]

Dementure onset

DEAR DENMAN 123, i to have recently been diagnosed with the early signs of vascular dementure, which i believe has been mis,diagnosed, but i never been given a scan of any kind to confirm it, despite a request for, one, i have now had my driving license re,voked, but am fighting for it to returned, as my memory is fine, i know how you feel i since seen 2 consultants, who have failed re,examine my case, as they claim that this dreadfull illness, cannot be mi,diagnosed, i wish you and everyone with this dreadfull disease all the very best

 

[Bodensee]

DEAR DENMAN 123, i to have recently been diagnosed with the early signs of vascular dementure, which i believe has been mis,diagnosed, but i never been given a scan of any kind to confirm it, despite a request for, one, i have now had my driving license re,voked, but am fighting for it to returned, as my memory is fine, i know how you feel i since seen 2 consultants, who have failed re,examine my case, as they claim that this dreadfull illness, cannot be mi,diagnosed, i wish you and everyone with this dreadfull disease all the very best

Mistakes can be made, interesting that you are receiving advice to the contrary.I would look for this on google if you feel doutbful about the consultants advice, as there are many other neurological diseases which are similar to vas.d.
Here is a useful link www.dh.gov.uk/dementia, you could also contact your local mental health team and see if they can arrange a scan for you, which they did for my mum and apparently this is routine in her area for people with memory problems, so I fail to see why you have not be offered one. Keep trying.

 

[sue38]

I think Mikyplum you're saying that you haven't had a scan at all, is that right?

Although not everyone who is diagnosed with dementia is offered a scan, I don't really understand how the doctors can have diagnosed vascular dementia without having carried out a scan.

This factsheet on Diagnosis and Assessment has some information that might be helpful.

 

[jeany123]

I think Mikyplum you're saying that you haven't had a scan at all, is that right?

Although not everyone who is diagnosed with dementia is offered a scan, I don't really understand how the doctors can have diagnosed vascular dementia without having carried out a scan.

This factsheet on Diagnosis and Assessment has some information that might be helpful.

My husband who has vascular dementia has never had a scan, the specialist said that his history of a triple heart bypass and peripheral vascular disease made one unnecessary ,

Jeany

 

[MIKYPLUM]

i have dementia

SUE 38, no sue i was never given a scan of any kind my dementia, was only diagnosed, with a questionaire, and talking to the consultant, who has put me on 10mg,s of aricept for life, but i strongly dissagree with his decision, i see a diffent consultant every 6 months, but they refuse to answer my request for a ct scan, to confirm whether, or not i do have dementure, and i dont where to turn to for help, i just feel that it has diagnosed, now i left to my own devices, to sort my problems out

 

[jenniferpa]

If they've put you on Aricept then it sounds as if they think you have Alzheimer's Disease or both vascular dementia and AD. In the UK aricept is really only prescribed if they think there is Alzheimer's Disease present.

Do you anyone to act as your advocate? Sometimes you need another person to push the system to perform: it can be particularly helpful if it is someone who knows how the system works. Have you had any contact with your local branch of the Alzheimer's Society? They may be able to provide you with assistance or at least, point you in the right direction.

 

[creativesarah]

I am sure you can ask for a second opinion

 

[Diz]

Right diagnosis??

Hi - been reading Talking Point & all your comments for a year or so now, but this is my first post.

My dad was diagnosed some 3 years ago+ with "mixed picture dementia" following a head scan - I too am wondering if the right diagnosis was given, and should I follow my thoughts and get more tests done, or just be grateful that my dad can access stuff now due to the diagnosis that previously wouldn't have been availiable to him? eg: monthly Singing for the Brain meetings (which he really enjoyed!!)

To me my dad (76yrs old) is no more confused than any one would be at that age! I want to learn LOTS more, and have found Talking Point a great source of info - I try to spread the word to folks who I think would benefit by reading / sharing info.

Diz

 

[JTSA]

I have CADASIL, an early-onset cerebral-vascular genetic co dition

I have just been diagnosed with Early Onset Alzheimers Dementia.This followed a session with a nurse at a Memory Clinic,a consultation with a specialist Doctor and then a SPECT scan and a CT scan.The scan results apparently support the diagnosis.

So my question is could the diagnosis still be wrong>I will ask for some blood tests to rule out anything that could mimic dementia but is there anything else this could be?

Does anyone have any experience of incorrect diagnosis?

Clutching at straws I suspect

SUGGEST YOU TEST FOR CADASIL. IT CAN BE DIAGNOSED THROUGH DNA TESTING. If you have family members with history of migraine, especially with aura, transient ischemic attack. arteriosclerosis, stroke or any multiple sclerosis symptoms, I suggest you test for CADASIL. Many treatments for wrong diagnosis are very wrong for other CADASIL and makes it worse. There is a Facebook Support group for CADASIL. Suggest you go there and ask questions. They say CADASIL is rare, but it is turning out to be more common than was know and many doctors have never heard of it.

Good luck to you. Regardless of your actual diagnosis, you are not alone.

 

[Mrs Dizzy61]

my diagnosis

At first I refused to believe that I had a problem - my family convinced me otherwise!! I have been diagnosed as having early onset and my consultant was supportive. Brain scan is normal(!) but symptoms persist. I have been taking Donepezil for10 months ( horrid side effects!!) but the family say I haven't deteriorated(!) and I am trying hard to live my life -its hard though isn't it!!