Small Vein Vascular Disease that will lead to Dementia

[chriscaz1]

Posts:1




small vein vascular disease that i have been told will lead to dementia



Hi

Not sure if this is the correct place to post this as new to the site. I have recently been diagnosed as having small vein vascular disease high risk of heart attacks and strokes.
also dementia.
What I was wondering is has anyone else had such a bad experience of being diagnosed
as me. I went to see a neurologist for numb hands and feet he thought possibly MS
after few weeks had MRI after which things went strange. I received a letter telling
me that I had small vein had a shock of my life when I went on the internet and found it was actually connected to dementia.
Since then its been confirmed but the specialist was not interested has not offered any
support he actually discharged me.
Would they treat anyone with Cancer this way. I would appreciate any info you can give me if anyone has any info on this condition

 

[Butter]

Welcome to this site chriscaz1. This is a good place to post.

My husband has small vessel disease. He has probably had it for many years. During most of those years he has continued to live an active and constructive life.

Although it can lead to dementia, there are no certainties that it will. There are no rules about how these diseases develop. Something else could easily happen instead.

The treatment for small vessel disease is anything that keeps the blood flowing: exercise, good diet, and - for some people - heart/blood medication. Your GP should be able to advise you.

I hope you find this site is helpful - if you have questions I'm sure people here will be able to help answer them.

 

[Noorza]

Hi Chris, sorry you need this site but I am very glad that you found us. Mum has small vessel damage from heart attacks and a stroke. The doctor told us that the progress will be very slow ten maybe twenty years. I would really think you might be comforted and informed by talking to your GP or the specialist who diagnosed you.

 

[chriscaz1]

Thanks for your reply
I spoke to my GP but did not find her very helpful, however will speak to her again she seems to have written me off already.
I have my cholesterol test tomorrow so should know more when results are in.
I have been considering going vegan as have been doing some reading have you found this a good way to reduce cholesterol.

 

[chriscaz1]

Thanks for replying most appreciated. I think that when I was diagnosed I was shocked and to be honest my specialist was not exactly supportive he told me by letter and when I eventually saw him he was not very informative.
The info I have got from you is the first time anyone has mentioned that period of time
it can take to be affected.

 

[Noorza]

Thanks for replying most appreciated. I think that when I was diagnosed I was shocked and to be honest my specialist was not exactly supportive he told me by letter and when I eventually saw him he was not very informative.
The info I have got from you is the first time anyone has mentioned that period of time
it can take to be affected.

I can only tell you what was said to me and my mum. They said it is a progressive illness that takes years to progress in my mum's case. In fact her heart and kidney dysfunction would take her before the dementia would. Not sure if that is supposed to be comforting for us but at least it sets out some expectations.

Everyone is different so I'd compile a list of questions you want the answers to and take it from there. Be sure though, here you are with people who understand and care very much.

 

[ddcandee]

Recent diagnosis leading to lots of unanswered questions

I am in a similar situation having been diagnosed with silent strokes which have been labeled vascular dementia. My language is still normal if I may use that term, but I keep getting weepy for no good reason. This is uncommon for me and I can't explain it to folks who ask what is wrong. For now, I've just started saying "having visit from Esmerelda" a made up name for my tears, as I have no better explanation. I loved your smile forum and I copy some of the helpful quotes to strengthen myself.'
What I worry about is if this is to be my future: someone to be avoided because people don't want to be around a sad seeming person.
And I know you are supposed to be open about your diagnosis, but will doctors and others start avoidant reactions to me or fail to take me seriously.
Will I lose all my friends as I have so few being pretty isolated geographically?
So many questions: As yet aware of so few resources. This forum has been such a blessing. Thanks.

 

[Saffie]

I went on the internet and found it was actually connected to dementia.

It says it can be, Chris, not that it inevitably will do so. In the meantime, any number of things could happen - that heart attack, an accident, just about anything not connected to dmentia. I don't mean to be the voice of doom but I hope you can see what I mean. I can fully understand your worry but do take heart from what others have said about the time scale. Very best wishes.

 

[Izzy]

Good morning ddcandee.

I'm so sorry to read about your diagnosis. I know there are others on this forum who have a similar diagnosis. I'm sure you will find their posts and threads helpful.

If you have a browse for this part of the forum and look out for posts from Creative Sarah and Barry I'm sure you'll find them useful.

http://www.alzheimers.org.uk/site/scripts/download.php?fileID=1812

I know you will receive lots of help and support on TP.

 

[maryw]

Hello and welcome Chriscaz1. Following a recent major stroke and many silent strokes, my husband too has been diagnosed with small vessel disease. Nobody has even mentioned the word dementia but he is taking part in a research study monitoring blood pressure to reduce the risk of cognitive decline. We don't even mention the word dementia at home and focus on the words stroke prevention. It is so easy to worry about the future and miss living in the present. It may or may not happen. Eating a diet rich in oily fish and vegetables is a positive as is daily exercise and maintaining social skills. I do know my husband has been diagnosed with moderate and established small vessel disease and I recognise changes in emotional lability (crying) judgment and inability to make decisions. He has no concept of this. We continue our lives and look for as many good times as we can possibly fit in...... Hope that helps in some way...

 

[chriscaz1]

Thanks for replying I have told some of my friends and the majority have been very
supportive the only thing is that I feel I have to support them as they have been very shocked. I received my diagnosis by letter from a very unsupportive consultant and I cried loads especially after speaking to my GP and having it confirmed with no support.
I think you should not be afraid of showing emotion anyone in our position would feel the same.
Please remember you are not alone you can contact me anytime. I have decided to start fundraising I am going to try and grab control of my life again.

 

[chriscaz1]

Thank you for replying this site is such a supportive one thanks for the details regarding
your husband. I think it helps finding out how many other people are dealing with
the same issues, when I was first diagnosed I felt quite isolated as I did not know anyone who was in the same position and what to expect. I hope we get a bit more sun so you and your husband can get out and about before winter comes.