Second Opinion

[Rayreadynow]

There were so many people involved in the diagnosis I am now thinking if it would be possible to get a second opinion because there were a lot of if, but and maybe to the original diagnosis?

 

[Kevinl]

Hi, does this relate to something you've posted earlier that I've missed. Sorry but who got diagnosed and what with, as I say must be something I missed.
Just clarification for anyone like me who doesn't know the story, or a link, mods can do this for you. K

 

[Rayreadynow]

Well, Memory Clinic specialist doctor initially said it maybe be moderate to severe Alz Dementia but could not confirm until a CT scan was done. Then a psychiatric doctor said it was Lewy Body Dementia but still no CT scan had been done.

 

[SeaSwallow]

@Rayreadynow if the doctors suspect that it is LBD it is best to have that confirmed as there are medications contraindicated for LBD.

 

[nitram]

@Rayreadynow if the doctors suspect that it is LBD it is best to have that confirmed as there are medications contraindicated for LBD.

Agree with @SeaSwallow.
You could ask for a referral to a neurologist specialising in adult movement disorders to investigate any parkinsonism.

 

[maggie6445]

Agree with @SeaSwallow.
You could ask for a referral to a neurologist specialising in adult movement disorders to investigate any parkinsonism.

Mmm . You can ask but don't hold your breath while you wait. Our referral has lead to an appointment for 30 September !
My OH had a dat scan in 2021 which is what they use to determine Lewy Body dementia. There were very early changes but was inconclusive .
Now has symptoms of parkinsonism. As I say , appointment not til September.

 

[nitram]

Mmm . You can ask but don't hold your breath while you wait. Our referral has lead to an appointment for 30 September !
My OH had a dat scan in 2021 which is what they use to determine Lewy Body dementia. There were very early changes but was inconclusive .
Now has symptoms of parkinsonism. As I say , appointment not til September.

Just looked back, in November 2009 my wait was 5 weeks!

 

[maggie6445]

GP was seen 15 Jan and said he'd refer to neurologist so it's an eight month wait now

 

[nitram]

GP was seen 15 Jan and said he'd refer to neurologist so it's an eight month wait now

In my wife's case referral to neurologist was by psychiatrist, don't know if mates' rates applied.

 

[maisiecat]

GP was seen 15 Jan and said he'd refer to neurologist so it's an eight month wait now

Try pestering them for an earlier appt and also phone the clinic and say you will take a cancellation. The NHS is definitely now about those who shout loudest

 

[maggie6445]

Try pestering them for an earlier appt and also phone the clinic and say you will take a cancellation. The NHS is definitely now about those who shout loudest

The first appointment was 16 September but I didn't know that til I got a letter saying they were sorry and it was being put back to 30 the September! The original letter arrived a week later. Cynical I know but I think they never intended the 16th but that it was given then cancelled to meet some time target. May be wrong. but can't help thinking I'm right

 

[maisiecat]

The first appointment was 16 September but I didn't know that til I got a letter saying they were sorry and it was being put back to 30 the September! The original letter arrived a week later. Cynical I know but I think they never intended the 16th but that it was given then cancelled to meet some time target. May be wrong. but can't help thinking I'm right

Hi @maggie6445 I don't think you are being a bit cynical as I think their is a massive erosion of service for the elderly and particularly PWD. I hear the words he's not entitled about my husband if I ask about things.
Generally I think younger people seem to dislike the elderly. I travel on 4 buses to see my husband most days. Lots of times I am jostled out of the way while queuling for buses by teenagers.
Ironically our generation are the ones who paid in fully to the system.
Keep pushing, when my Mum had dementia many years ago I found until they sighed when they picked up the phone to me I didn't get anywhere

 

[maggie6445]

Hi @maggie6445 I don't think you are being a bit cynical as I think their is a massive erosion of service for the elderly and particularly PWD. I hear the words he's not entitled about my husband if I ask about things.
Generally I think younger people seem to dislike the elderly. I travel on 4 buses to see my husband most days. Lots of times I am jostled out of the way while queuling for buses by teenagers.
Ironically our generation are the ones who paid in fully to the system.
Keep pushing, when my Mum had dementia many years ago I found until they sighed when they picked up the phone to me I didn't get anywhere

Mmmm.... I sense the receptionists at my GP surgery think," here she comes again!" Body language and false smiles🤣

 

[SMBeach]

As far as I’m aware dad never went to any memory clinic. He was diagnosed via a ct scan only. I believe he had some sort of test done years earlier to which he scraped a pass so wasn’t diagnosed with dementia. Even then I believe he did. I’ve always wondered how accurate the diagnosis was/is. Dad had 2 sisters with Alzheimer’s though. I can’t figure out the noticeable difference between Alzheimer’s and vascular so I’ve no idea if he might have mixed dementia. Waiting lists there are every bit as bad. Dad waited almost a year or longer for appointment for suspected basal cell carcinoma. Sorry I have no useful advice for you but if you feel you need a second opinion then go for it.

 

[maisiecat]

As far as I’m aware dad never went to any memory clinic. He was diagnosed via a ct scan only. I believe he had some sort of test done years earlier to which he scraped a pass so wasn’t diagnosed with dementia. Even then I believe he did. I’ve always wondered how accurate the diagnosis was/is. Dad had 2 sisters with Alzheimer’s though. I can’t figure out the noticeable difference between Alzheimer’s and vascular so I’ve no idea if he might have mixed dementia. Waiting lists there are every bit as bad. Dad waited almost a year or longer for appointment for suspected basal cell carcinoma. Sorry I have no useful advice for you but if you feel you need a second opinion then go for it.

Hi @SMBeach ,my long held view is that they slant simple memory tests to be able to deny a diagnosis of dementia. Not sure why as there is no particular funding attached to dementia.
My husband was still scraping the test according to the CPN at the point he was urinating in waste paper bins because he couldn't find the toilet in the house we had lived in since 1988.
Detailed memory tests should be standard,if you know which part of the brain is affected you can anticpate symptons and also be advised of what will help a little