Never ending process ?

[Mybdementia]

Hi all
Just wanted to know if anyone else has had the same experience ? Im just 50 and for the past few years ive noticed memory loss. I was living in Plymouth and after starting the process at Exeter i finally had memory and cognative tests done and CT scan , after almost 12 months i finally had my first apt with neurologist who said CT scan was no use and i would need a MRI done.
Ironically I had to leave Plymouth to move north to care for parents as my dad is very ill with dementia. So ive had to start the process again at Birmingham. My memory tests were ok but my cognative were the lowest possible scoring , ive got a 3mth wait to see a neurologist at Birmingham then join the q for an MRI. To try and speed up the process my gp booked me for an MRI at Cannock hospital but I was then told the Birmingham hospital has a better MRI scanner and that they will not look at a scan from another hospital . Ive been unable to leave the UK for the past year as i cannot get travel insurance due to current investigation and it looks like it could be mid to late December before im finally infront of a neurologist and had an MRI. Its exhausting , ive been told it could be early on set alzheimers or brain damage from when i was almost murdered about 10 yrs ago but that seems a long shot. I have HIV and theres a chance it could be HIV related dementia.
Is everyones experience similar , the process seems as tricky to handle as the possible outcomes ?

 

[karaokePete]

Hello @Mybdementia, welcome to TP. I hope you find the forum to be a friendly, informative and supportive place.

The AS Publications list may be a good place to look for general info and here’s a link to it https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

Beyond that, because of your complex history you may get some value out of speaking to the experts on the help line, details as follows

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[yorkie46]

Hi Mybdementia

I was sad to read about your difficulties but having read other posts on this site quick diagnosis appears to be rare as is the much heralded early diagnosis.

My husband started to deteriorate and show signs of dementia in 2010 following a difficult recovery from heart surgery. I have been trying for six years to get some sort of diagnosis without success. He has had memory clinic appointments and assessments which in my opinion have become gradually worse but I keep being told are within normal limits. Each time he has been discharged so I've had to start the whole process again.

I'm July he had neuropsychological tests. We still have no report. They want him to go for more tests but he refuses. I have never had the chance to speak to anyone on my own and all the notes I've made have never been taken into account. He refuses to go anywhere without me. He says he doesn't need to socialise he did enough of it when he was younger! The psychologist tells me she hasn't forgotten me and understands my difficulties but keeps making suggestions that are impossible to implement whilst he believes there's nothing wrong with him.

I'm now facing a possible cancer diagnosis. He knows about it but seems able to switch off about it, he doesn't understand how I feel. I feel so alone, keep crying but have to somehow carry on and deal with the shopping and cooking even though my stomach is doing backflips and my concentration is shot to pieces.

Fingers crossed the diagnosis won't be as bad as I fear.

Good luck.