Forum

MS Dementia

In shock at the moment, my husband who is only 47yrs old was told on a week ago that a brain scan done in 2016!! yes it has taken that long to see his consultant, showed signs of shrinkage and he is now classified as having onset dementia.

He has been put on medication for moderate to severe dementia, but no additional support offered or even basic information on how this will play out. I am reading suffer that is saying the average dementia patience lives 4 -5 years !!!

Does anyone else have experience of this side of MS. They have said he has active lesion in the brain which are making parts of the brain die and therefore the brain is shrinking.

What does the future hold, is it likely to be a short one now?

Totally gutted at the news and the lack of support and information supplied by Medway Hospital.

Irene that is awful , I think it’s terrible that a scan from 2016 has taken so long for them to call you back and discuss life changing findings. I’m also amazed that there doesn’t seem to be any support for you after such awful news. I’m not sure about where you would get advice accept to say that this is a wonderful group and we are all there for each other. I’ve just had an mri myself but haven’ received the results yet. My disability is classed as fnd. Which they think is a non organic disorder. I’m hoping that they will find the cause I’ve been a wheelchair user for 5 years and I’m affected cognitively too . I had my driving licence revoked . I struggle to multi task and im unable to work. I hope that you manage to get some answers to what must be a worrying time for both of you. Michelle and Frazer xx

So sorry to hear your news l hope the medication slows down the dementia. I live in kent and know how bad our hospitals are especially medway.

I have severe cognitive problems due to my MS and was prescribed a tablet usually for Alzheimer’s which has helped me enormously.

I take the higher dose which is ten milligrams and is called Donepezil hydrochloride.

It has recently become much worse, I think probably because I am having chemotherapy at the moment, I’m hoping very much that it will settle down again when I finish my chemo.

I was told that it would be unlike normal dementia as I might not always know where the bathroom is but I will always be able to recognise my family, I hope this is the same for your husband.

Take care,

Nina x

Irene,

I’m sorry to hear about your husband that’s just awful, and wrong in so many ways.

Unfortunately I don’t know much about Dementia to offer you any advice but I hope that the medication he has been put on will help him.

Thinking of you both, take care.

Twinkle Toes x