cadasil
 

Hi I am a belgian lady with 3 kids and I have cadasil, I know since 2002 that I have it. I was wondering if more people have the disease and wich medication they take and their age. Iam 40 now, take asperine, ad, zocor, vit b, l'arginine.
Hope to find some more people on this site.
greetings sylvia
sylvia.pinxteren@pandora.be
Pls mail me thx

Hi Sylvia!

I had never heard of your condition, so looked it up https://ssl.search.live.com/health/r...schemic+stroke

Sounds awful -- so sorry for you.

Glad you found NeuroTalk. There are a good group of good and caring people here. I hope you are able to get some answers and help with your health problems.

Welcome!

Hi,
 

I hadn't heard of your illness either but I just wanted to welcome you to the group and I am sure you will find some answers and support here.

Ada

Hello Sylvia and Welcome to NeuroTalk.. Please take a look around and make yourself at home. Glad you found us.

http://dl2.glitter-graphics.net/pub/...eg7mirri2o.gif

Hello Sylvia and welcome to NeuroTalk. We don't have a Cardasil Forum as such, but we do have several members with that condition.

Have a look around the site and post where ever you feel comfortable. We have a search option on the top of the page as well. If you type in Cardisal, all posts, you will see some other members who have recntly discussed this condition.

I also thought you may benefit from our Stroke Forum. Here's the link to get you started. I hope that you drop in there and say hello : http://neurotalk.psychcentral.com/forum23.html

Hi, Sylvia! :Wave-Hello: Welcome to NeuroTalk!

A few of our members also have cadasil, there are some discussions about it in our rare disorders forum. I hope you'll find some answers soon. :)

Rare Disorders:
http://neurotalk.psychcentral.com/forum2.html

Hi Sylvia! Welcome to NeuroTalk!


http://i283.photobucket.com/albums/k...s/Welcome3.jpg

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Sorry that I missed your original post. I have cadasil, and am not taking anything for it specifically, instead I am working on high bp, diabetes, sleep apnia, and high colestral, taking meds for those. I also have resumed exercising, specifically swimming. I am a former US masters swim champion, so the swimming I do is fairly rigorous, but since I restarted exercising, I have felt great. I have to watch heating up my core temperature too high as that causes myoclonus jerking so I take cold showers and stay away from hot tubs, at least most of the time....sometimes nothing feels as good as a hot shower or a soak in a hot tub...but I usually pay a price when I indulge.

Welcome to Neurotalk, if I can be of any assistance, let me know.

I have never met a doctor (other than my neice who has seen another case of cadasil, and I expect that you have. Correct? or not??

sorry
 

Hi you all, thanks for welcoming me on this site!

I am sorry it took so long but I am a member of a lot of communities to find some people who have the same as me!
Hi Michael, I also take some medication but nothing specifically for cadasil! I take som blood thinner, something for my cholestrol and some AD.

I am still doing okay and I hope it will stay like this for a long time.

I live in Belgium so I do noy think that I am the other person.

Doctors are okay here, don't know much about it but really try to help me.

I also take l'arginine , a gram only a day! I do not know if it helps, maybe we will see in the future.
My MRI did not change in 6 years so that is good news! Hope hearing from you soon!

greetings from belgium, Sylvia