My name is Daryl and I have been misdiagnosed

daryl2510

Hi there,

After 15 years, a quarter of my life, I have been misdiagnosed with Alzheimer's Disease and taken off the medication for dementia I was put on from the beginning...

To say I was shocked is the understatement of them all, I am extremely angry and bitterly disappointed by the failure of the NHS Mental Health Services for allowing me to believe I had a terminal condition since I was 45 years old, medicated for it - only too find out that I never had the illness in the first place!

How was this found out? In December 2025, I had a stroke and was hospitalised and to find out what particular kind of stroke I had, I had to have a MRI scan done.

Forward to April this year and after persistence to my GP, I got a medical appointment with psychiatry. It was at this appointment that the psychiatrist dropped the bombshell on me, and to be honest I haven't been the same since!

He said "I should be happy and rejoice at the news!" But at that split second I was all on stopping myself from going for him... The anger was so strong! Yes I should be happy that I haven't got dementia, but for 15 years I was told that I had, medicated for it and then suddenly all that just stops - on the same day... I should apparently, be happy about the fact that I hadn't got an illness to start off with!

I have been to see my MP and I have written a formal Letter of Complaint to the NHS Trust that runs my mental health services...I have also requested and sent a SARS to the Trust and to my GP to get all necessary documentation over the last 15 years, because something has gone disastrously wrong somewhere.

I got to rebuild my life all over again now, a complete nervous wreck, yet I can't trust the mental health services in my area (Nottinghamshire) because it is then I have officially complained about...

My life is complicated!

SmellyBin

Complicated indeed, Daryl. I am awfully sorry about that enormous mistake and can imagine your life being… well… turned upside down doesn't seem to begin to describe it.
Let me just send you a pat on the back for dealing with all of this, not just the misdiagnose, but also how to pick up the pieces, and people's ignorance over something this massive.

Rosie_Scope

Gosh @daryl2510, that's awful! I'm so sorry you're in this position and the anger you have towards the NHS and other services for what's happened to you is totally valid.

It's understandable that you don't trust the NHS mental health services, but it would be good to seek out some support if you can manage it. As Santosha kindly posted, if you have the means it may be worth speaking with a private counsellor or therapist to work through everything. It sounds like a huge thing to process on your own. Do you think that would be an option for you?

Wishing you the very best.

daryl2510

https://forum.scope.org.uk/discussion/comment/1132080#Comment_1132080

It sounds good, in practice, but being on state benefits due to illnesses, it is out of my league to go privately…

I'm like in the middle of the Devil and the Deep Blue Sea nursery rhyme! Damned if I do go and see NHS Psychiatry (because anything I might say to them, they will use against me, should I take this further) and damned if I don't because my mental health state is going to keep on suffering.

Hence, why I say my life is complicated at the moment… I know I will get through it - it's just knowing how to and finding the right way. At the moment all the ways seem blocked and overwhelming! But I will chisel my way through, gradually, eventually - and then take the fight to the NHS for their incompetence and dangerous behaviour!

Rachel_Scope

Oh my goodness @daryl2510, I can't imagine going through that. I can somewhat understand the Dr saying you should be happy as yes, it's wonderful that you don't have dementia, but that's been your reality for the past 15 years and to have someone say you never had it must be incredibly confusing and upsetting! I'm glad you've filed a complaint and done a SAR. I'm very intrigued to see how they came to this misdiagnosis.

Do you have support at home to help you through this?

daryl2510

https://forum.scope.org.uk/discussion/comment/1132230#Comment_1132230

I have my local solicitor looking in and my MP involved, but I'm pretty much on my own.

My lad, well my nephew actually who I raised from a teenager onwards, died 3 years ago aged 47 from stage 4 cancer - his main concern was me and working that I wouldn't be logged after properly with dementia, as he had always helped me with things... He asked his children to watch me but they are young and I don't want to be a bother to them.

It saddened greatly that he has died thinking I had Alzheimer's disease, with all the time I was living a lie, complained into my brain you could say, by the NHS negligence...

Rachel_Scope

I'm so sorry to hear to hear about your nephew. It must have been such a difficult loss for you. I'm sure his children would love to help. Do you speak to them at all?

I'm just so shocked by this whole situation and I hope you get the answers you deserve and are eventually able to move on. I know you're unsure about getting counselling through the NHS but I would encourage you to look into it. You've been through something so incredibly hard.

Holly_Scope

I'm so sorry to read all you've been through @daryl2510. I can't imagine how you must be feeling.

SheffieldMan1976

This is shocking, I mean OK yeah I'm painfully aware the NHS isn't perfect by any means, but this level of incompetence?!

ChrisR777

https://forum.scope.org.uk/discussion/comment/1132334#Comment_1132334

A medical misdiagnoses does not always imply incompetence, as not all cases presented are textbook examples.

daryl2510

https://forum.scope.org.uk/discussion/comment/1132428#Comment_1132428

You've been extremely kind and very helpful with all the organisations I can look at when I feel the motivation too - believe me, it is very much appreciated by myself and your patience and care is a breath of fresh air in this evil fog in my mind… thank you!