Hi , looking to find others who have Moya Moya please .
It’s a rare blockage in the brain where the body then created smaller new veins to carry the blood etc
I had a stroke 4 years ago and then out I had this condition . It scared the life out of me , 4 years later I was living a normal life again ( I have multiple illnesses but for me I was doing my every day things when I could again ) then Wednesday last week I had another stroke … Now all my anxiety and googling this illness etc etc are consuming my waking thoughts .
There is so much more to my illnesses but this is the main worry of mine for now .
Looking for others to chat with about how you get through every day knowing you could have another stroke any time …
Will it leave me in a wheelchair next time ? Will it be fatal ?
Am I going to get them more frequent the older I get ?
Walton hospital is phoning me tea time so I have of questions of course to ask him .
In saying that, from what I’ve just read up, so long as you are receiving the right treatment there’s no reason you can’t have a normal life. And that is what you have to concentrate on because stressing out about the unknown is not good for you either. Your doctor will no doubt have a clearer picture for you going forward.
In the meantime distractions are key to alleviating your anxiety. Keep busy with things that require concentration, attention to detail to steer your mind of the subject until you hear from the hospital.
I do hope they can help give you peace of mind
Welcome to the community, I’m sorry to hear of your strokes and the diagnosis you have been given. There was another thread on here from a while ago that had some people talking about it, I can see you’ve found that post and I hope you’ll get some replies on it soon.
Wishing you all the best and if you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Hi @Jenks73 just popping by to say hi & welcome to the community. Sorry to hear about your strokes & the additional worry of moya moya.
I agree with @EmeraldEyes that you should try not to stress about the unknown or something that might not happen. Easy to say not so easy to do I know.
Hopefully you’ll get some answers at your appointment today.
I’m sorry to here you’ve got this condition and I’m afraid I’ve never heard of it.