Small vessel disease

Hello

I am male and 56 years old. Late 2021 I had a brief incident that lasted only a matter of minutes where my vision went double. As I stood up I collapsed to floor as I was spinning. After a visit to hospital I undertook various tests all of which were clear except for the Brain mri which shows moderate to severe microangiopathy. This condition , they say , is the reason for the mini stroke , tIa that they have diagnosed based on the clinical symptoms. With normal bp , no diabetes etc I am told this is probably genetic. I wondered if this is familiar to other folks on this forum? Also with the threat of further TIAs and strokes going forward does anyone have a tip with how to get in the right mind set to deal with that. Feels like a major game changer in life to have had this but the fear of more serious consequences is quite concerning. Any advise would be appreciated.

Thanks

Hi @Welclose sorry to hear you’ve been diagnosed with a condition which may lead to repeated TIAs.

I don’t have any experience with microangiopathy so can’t offer anything constructive in that regard, sorry about that.

We all live with the uncertainty of whether we’ll have another stroke/TIA, as a stroke/TIA can strike anyone whether they be young, old, fit etc.

My advice would be don’t dwell too much on the fear, do all you can to look after yourself, look at your diet and make improvements if you can, take any meds you’ve been prescribed regularly, exercise/move your body but most importantly live your life, enjoy your friends, family and loved ones.

We’re here if you need a friendly ear to chat with or support if you need to talk.

Some others on this forum may have experienced the same condition you have and I’m sure they offer their support.

Best wishes, take care

@Welclose welcome to the forum. I echo all that @Mahoney has said. As difficult as it is you should try not to worry & try to keep your stress levels down. Anyone is at risk of serious illness at any point the only difference is they don’t know about it. Live healthily & live your life as best you can.
Best wishes.

Ann

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Thank you for your message which is much appreciated.

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Agreed. Thank you. Good advise.

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As the others have said “Welcome” its a good bunch for support & morale boosting.
Advice on less common causes is often hard to come by. You could try the ukabif, there may be folk here or in Different Strokes face book group or try PatientsLikeMe.com - its us based and the ‘cost’ of joining is they aggregate the info for research
A uk one that says it gives you access to your own records but I’ve not tried yet is patientsknowbest.com

There are more listed on The 20 Best Alternatives to PatientsLikeMe - I don’t know how reliable it is but for rare conditions I’d look

Thank you very much for the info and links.

I know this post is old but I wanted to say that I am in the same place as you now- worried about how to prevent future strokes due to the cerebral small vessel disease. I just had a second stroke after having 7 months of great BP. Glucose levels, & cholesterol. (That was not the case when I had the first big stroke in 2022) Have you been any additional advice about possible ways to reverse csvd? Everyone on this forum is great about offering support for the fear so now I’m looking at the many people who also seemed to have no risk factors.

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I took part in a research project for the first year post stroke where I took some drug whose name I will have to look up if you want me to name it but I’m not sure where I’ll look - it is common on the continent but not in the UK. the research was to see if long-term usage was indicated for protection against small vessel - involved a few MRI scans as well as the drug.
I remember at high doses it gave me awful diarrhoea but I could tolerate a low doses and I had to slowly ramp up and ramp down at the beginning and trial.
I don’t know whether theyve publisher results yet but I can say with certainty the question you’re asking has been the subject of reasonably recent research so a good trawl through Google scholar, academia.edu, researchgate.com should turn up peer reviewed papers on the topic.

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It does seem that there are a great many people out there with Csvd who have are stroke free. My understanding from the neurologist is there is no way of reversing.

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I understand that the causes are treatable.
I think the jury is still out as to whether there are treatments that reverse some of the deteriorations and that’s what the research I was involved in was investigating I think.
If you’re a neurologist phrasing was " we haven’t yet discovered how to …" then I think that was probably right.
if his phrasing is “there will never be a way to…” I think he’s probably wrong
2 cents

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