Feeling confused

[PJ]

hi
It’s taken me a while to work out how to post. I used this forum about a year ago when I’d been referred to the memory clinic for the first time.
Since then I left my job at the end of Aug ‘17 due to my memory, confidence & other health problems.
I had a 2nd MRI in Dec & have been back to the memory clinic for more tests. Each time nothing obvious shows up.
The clinic have now arranged for me to do some different tests on Tues at the memory clinic. They want me to have a SPECT scan (I’d never heard of it) & a driving assessment (tomorrow!) as my concentration is poor.
I’m not the same person I was 18mths ago, I feel different, think differently & struggle with my short term memory.
Is there anyone out there in the same boat? It feels like it’s been such a long journey just to get to here & still we have no answers I’m scared things are getting worse & I don’t know what to do.
If there is anyone in a similar situation I’d love to talk.
Sorry if this all sounds miserable but I can’t talk to my mum about any of this as she has Parkinson’s & is very unwell.
x

 

[Shedrech]

hello @PJ
I'm glad you thought to find TP again and post
there is the AS Helpline if you'd like to actually talk to a person in real time
0300 222 11 22
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[karaokePete]

Hi, I’m not in the same position as yourself but can advise that the type of scan you are now about to undertake was what finally showed the brain shrinkage that enabled an Alzheimer’s diagnosis for my wife as it produces detailed 3D images. The scan was helpful to my wife as it enabled the prescription of specific meds which have helped her. I wish you the same sort of luck with that.
You may find the forum site a bit different as it had an overhaul a few months back so is slightly different.
Has the clinic put you in touch with a CPN (nurse)? This was done for my wife and we.both found talking to the CPN useful.

 

[PJ]

hello @PJ
I'm glad you thought to find TP again and post
there is the AS Helpline if you'd like to actually talk to a person in real time
0300 222 11 22
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Thank you I may give them a call later in the week. I do find TP very helpful.

 

[Peachez]

My husband had a SPECT scan (it's just a specailised PET scan, nothing to fret about). His consultant expained that MRI and CT look at the brain's roads, the SPeCT looks at the traffic on those roads.

For my OH His MRI and CT had been clear but SPeCT showed that oxygen take up was not as it should be in certain areas. With this and the memory clinic results, he was diagnosed with Mild Cognitive Impairment, the stage that comes before Dementia can be confirmed, MCI can last for years and doesn't always progress.

He lost confidence too, has trouble with planning and numbers, and sometimes finding words. He retired shortly before all this became obvious.

Anxiety can come with many of conditions of the brain, and that too can affect your confidence.

Hope your CPN and help you. XXX

 

[Tricot]

I had to reply because your post rang so many bells with me.

"I feel different, think differently & struggle with my short term memory."

This is how I feel, too. I first went to the memory clinic last March, then again in September. I've had an MRI and CAT scan. The radiographer said the MRI showed 'moderately more' white matter lesions than he would expect for my age, 67. He put this down to high blood pressure. I pass the MMSE and other tests at the memory clinic with ease but I've learnt from this forum that means little. I'm due again at the memory clinic in March when a PET scan and lumbar puncture are on the cards.

This is all so frightening, as you say. I've researched extensively into other possibilities such as B12 deficiency but I feel I'm clutching at straws. Difficult not to be miserable in such circumstances, isn't it?

 

[PJ]

My husband had a SPECT scan (it's just a specailised PET scan, nothing to fret about). His consultant expained that MRI and CT look at the brain's roads, the SPeCT looks at the traffic on those roads.

For my OH His MRI and CT had been clear but SPeCT showed that oxygen take up was not as it should be in certain areas. With this and the memory clinic results, he was diagnosed with Mild Cognitive Impairment, the stage that comes before Dementia can be confirmed, MCI can last for years and doesn't always progress.

He lost confidence too, has trouble with planning and numbers, and sometimes finding words. He retired shortly before all this became obvious.

Anxiety can come with many of conditions of the brain, and that too can affect your confidence.

Hope your CPN and help you. XXX

Thank you for your response it is very reassuring x

 

[PJ]

I had to reply because your post rang so many bells with me.

"I feel different, think differently & struggle with my short term memory."

This is how I feel, too. I first went to the memory clinic last March, then again in September. I've had an MRI and CAT scan. The radiographer said the MRI showed 'moderately more' white matter lesions than he would expect for my age, 67. He put this down to high blood pressure. I pass the MMSE and other tests at the memory clinic with ease but I've learnt from this forum that means little. I'm due again at the memory clinic in March when a PET scan and lumbar puncture are on the cards.

This is all so frightening, as you say. I've researched extensively into other possibilities such as B12 deficiency but I feel I'm clutching at straws. Difficult not to be miserable in such circumstances, isn't it?

Hi as selfish as it sounds it feels reassuring to know there’s someone out there in the same boat. I hope you get some answers soon.
I’m 51 & my sister always says oh it’s the menopause but I know it’s not. I don’t talk to anyone else about it other than immediate family & my very supportive husband. How about you? I hope you have a good support network.
I gave up my job in July ‘17 & am finding it much easier & less stressful not having to try & remember so much!
I went to the memory clinic again this wk & did different tests & answered some paper questions, my husband answered some too.
The Spect scan sounds like it will give some answers.
Thank you again for your reply.

 

[PJ]

Hi, I’m not in the same position as yourself but can advise that the type of scan you are now about to undertake was what finally showed the brain shrinkage that enabled an Alzheimer’s diagnosis for my wife as it produces detailed 3D images. The scan was helpful to my wife as it enabled the prescription of specific meds which have helped her. I wish you the same sort of luck with that.
You may find the forum site a bit different as it had an overhaul a few months back so is slightly different.
Has the clinic put you in touch with a CPN (nurse)? This was done for my wife and we.both found talking to the CPN useful.

Hi thank you for your response. How is your wife doing now she has medication? I do hope things are good for you both.
I’ve not been given a CPN nurse. Sorry not sure what it stands for? Although I am able to phone & leave messages for Dr Hinton (Clinical Psycholgist) is she the same asa nurse?
On the upside my drive assessment was ok & am fine to drive although they have informed the DVLA of my cognitive ‘problems’ & have asked to test me again in 6mths which I’m more than happy to do.
I can’t tell you how good it is to be able to speak to people who understand the confusion.

 

[karaokePete]

Hi thank you for your response. How is your wife doing now she has medication? I do hope things are good for you both.
I’ve not been given a CPN nurse. Sorry not sure what it stands for? Although I am able to phone & leave messages for Dr Hinton (Clinical Psycholgist) is she the same asa nurse?
On the upside my drive assessment was ok & am fine to drive although they have informed the DVLA of my cognitive ‘problems’ & have asked to test me again in 6mths which I’m more than happy to do.
I can’t tell you how good it is to be able to speak to people who understand the confusion.

I'm glad we are helpful. I know this forum has been a great help in helping me help my wife as the members are all so friendly and helpful. Keep posting yourself.
CPN is Community Psychiatric Nurse. We were put in contact by what our area(N Ireland) call a Dementia Navigator, which I get the impression is similar to Admiral Nurses in England. Very helpful people.
My wife is doing quite well. Donepezil made her function better as she seemed more aware of what is going on around her and eager to help me than she was before taking it. Memantine has almost eliminated the visual and auditory hallucinations that he had been having prior to its prescription. She still has periods where she is more anxious and confused than normal but has lots of good days when she is quite sharp too since going on to the combination. I still see something of a decline going on but it has slowed to a pace where only someone like me who is with her 24/7 would notice. Having said that, I'm aware that my wife still exists and play to her strengths rather than seeing her as a PWD (person with dementia) and I have no doubt that that helps a great deal too. I can also tell when she is having a bad day and give extra help and reassurance when required.

 

[PJ]

I'm glad we are helpful. I know this forum has been a great help in helping me help my wife as the members are all so friendly and helpful. Keep posting yourself.
CPN is Community Psychiatric Nurse. We were put in contact by what our area(N Ireland) call a Dementia Navigator, which I get the impression is similar to Admiral Nurses in England. Very helpful people.
My wife is doing quite well. Donepezil made her function better as she seemed more aware of what is going on around her and eager to help me than she was before taking it. Memantine has almost eliminated the visual and auditory hallucinations that he had been having prior to its prescription. She still has periods where she is more anxious and confused than normal but has lots of good days when she is quite sharp too since going on to the combination. I still see something of a decline going on but it has slowed to a pace where only someone like me who is with her 24/7 would notice. Having said that, I'm aware that my wife still exists and play to her strengths rather than seeing her as a PWD (person with dementia) and I have no doubt that that helps a great deal too. I can also tell when she is having a bad day and give extra help and reassurance when required.

Wow it really sounds like the medication is a big help for your wife as well as you.
I’m guessing as I’ve had no diagnosis & am still undergoing tests they wouldn’t have given me a contact.
Do you mind me asking how your wife’s symptoms came to light? I fully understand if you do not wish to go into too much detail.
Many thanks.

 

[karaokePete]

Wow it really sounds like the medication is a big help for your wife as well as you.
I’m guessing as I’ve had no diagnosis & am still undergoing tests they wouldn’t have given me a contact.
Do you mind me asking how your wife’s symptoms came to light? I fully understand if you do not wish to go into too much detail.
Many thanks.

My wife and I are both 2nd time married and she suffered from anxiety and depression for many years before I knew her. When we got together I attempted to help her by getting her to seek alternative remedies from her GP and offering to come along and help her express herself - to which she agreed. At first we thought it just a matter of that but then, along the road, I noticed language, memory and behavioural problems creeping in and mentioned this to the medical team so they started to look at that and diagnosed MCI (Mild Cognitive Impairment) with follow-up tests and scans that resulted in her final diagnosis. Little, if any, of this would have been done without me being involved and pushing her case with her and the doctors. We are both very glad that the Alzheimer's was discovered early so that she could get full benefit of treatments. When she was diagnosed last year we both felt that our lives had come to an end. Now we are planning for the future, although my wife is still in the grieving phase caused by the diagnosis.

Don't get me wrong, it's a tough struggle and my wife always jumps to the worst possible scenario because of her depressive nature. However, I have always been a glass half full type and am quite eloquent when I want to be so I can turn her around in the moment(she always forgets what she's told so it all has to be repeated, but that's OK). For example, just yesterday she was talking about being dead in 10 years(she is early onset) so I told her that even big businesses don't plan that far ahead with any thought of accuracy and that, like them, she should just make short and medium term plans and keep moving the plan on as every year passes and she accepted the analogy. We are in a better place this year, because of her diagnosis and the treatment/understanding that produces, than we were last year when the issues caused by her unknown dementia were driving a wedge between us.

I do hope it all come right for you. Keep posting. I intend to be using this forum for many years and I look to the day when I read that things are improving for you.

 

[Tricot]

PJ, 51 is so young. Is there early onset dementia in your family? If not it's most likely not dementia, if I've understood correctly what I've read. What a relief to find some other explanation! Some days I still hope something else is going on with me but it seems less and less likely. I've even paid privately to have blood tests to confirm there's no vitamin B12 deficiency but won't have results for a couple of weeks.

I can imagine what a relief it must be not to have to worry about work responsibilities. Day-to-day living can present enough difficulties. Things which were previously almost automatic now take quite a lot of thought.

KaraokePete, depression seems to figure quite frequently in dementia histories. I've had depression on and off all my adult life and the memory clinic doctor believes my cognitive problems are because of depression. It's never affected me like this before but I suppose there's always a first time. I'd like him to be right but I really don't think so. (Glass half-empty!)

The very first thing I noticed about my memory was that every time I made a cup of tea, it was always cold when I went to drink it. I just forgot it was there. What was the first thing you noticed?

Hope your new test results give you reason for optimism.

 

[PJ]

PJ, 51 is so young. Is there early onset dementia in your family? If not it's most likely not dementia, if I've understood correctly what I've read. What a relief to find some other explanation! Some days I still hope something else is going on with me but it seems less and less likely. I've even paid privately to have blood tests to confirm there's no vitamin B12 deficiency but won't have results for a couple of weeks.

I can imagine what a relief it must be not to have to worry about work responsibilities. Day-to-day living can present enough difficulties. Things which were previously almost automatic now take quite a lot of thought.

KaraokePete, depression seems to figure quite frequently in dementia histories. I've had depression on and off all my adult life and the memory clinic doctor believes my cognitive problems are because of depression. It's never affected me like this before but I suppose there's always a first time. I'd like him to be right but I really don't think so. (Glass half-empty!)

The very first thing I noticed about my memory was that every time I made a cup of tea, it was always cold when I went to drink it. I just forgot it was there. What was the first thing you noticed?

Hope your new test results give you reason for optimism.

Hi, no there is no history of dementia in my family that I am aware of. My mum has Parkinson’s which was diagnosed when she was 69yrs.
Depression played a big role in my life along with terrible migraines but with medication I no longer suffer & it’s all under control.
I’m praying the SPEC scan will give some kind of answer.
I know what ever it is it’s got to be better to know.

Some of my first noticeable problems were repeatedly asking the same questions because I’d forgotten I’d already asked? Starting tasks & not finishing them, leaving candles burning, tap running & face recognition. Following storylines & recognising characters in soaps & films is getting harder so I get very frustrated.