07/09/2024
Having been given a similar early diagnosis, and where symptoms get thought to be part of an existing condition , it so important to do our own research and to push f you believe something wrong..
The nhs and the medical system has gone down hill.. people being turned away..
My ma was misdiagnosed her terminal illness, my Pa very late for his dementia and my daughter despite being diagnosed with her chronic conditions, gets fobbed off and can’t get appointments..
Push push, be your own voice:
'My husband has Frontotemporal Dementia (FTD) and started showing symptoms at the age of 48.
'FTD affects the front and side of the brain (behaviour and speech) as opposed to the back of the brain (memory) in Alzheimer's, so he passed the memory test and was misdiagnosed as being “hypomanic bipolar”. He has a big personality and a lot of energy but that wasn't the problem.
‘As his symptoms grew worse over the following years the effects on our child and I were devasting. I had to find out what was really wrong with him and after researching all his symptoms I was sure he had FTD. He had every symptom on the NHS website.
'I went to the GP with him but was told that Mark already had a diagnosis and it wasn't up to me to question it. I asked for a referral for a scan and was refused. The GP had never heard of FTD.
'I kept phoning him in the following days, weeks and months explaining that my husband was like a different person now, and if he had known him before he would understand the changes in his behaviour were so drastic they had to be neurological.
‘I was getting nowhere and was at the end of my tether. I was trying to keep all the plates spinning, keep a roof over our heads, protect our son and look after my husband. I didn't give up and after about 6 months he finally gave in and referred us.’
'The neurologist was incredible, I cried with relief that someone finally understood. The brain scan clearly showed the atrophy caused by FTD. It should not have been that hard to get help.
'There were many times I felt like giving up so there must be hundreds of other misdiagnosed people out there. I was 45 and our son had just started secondary school when Mark was correctly diagnosed in 2018, six years after the symptoms began.
'Our whole lives had been turned upside down but once we had a diagnosis things actually started to get a bit better. I didn't feel like I was on my own anymore and we could explain to people why Mark was behaving so strangely.
‘Mark's symptoms were so different to people's perception of the disease, but people are a lot kinder when you can explain to them that it is dementia, a cruel disease called FTD with no cure yet.’
