Greetings! I was recently diagnosed with Cadasil. Would love to participate in discussions on this site related to all aspects of prevention/treatment/emotional care surrounding neurological diseases, particularly strokes.

Blessings to all.
Carla
San Francisco Bay Area, CA

hello carla,
I was wandering around and came across your post. I don't know if I responded to it before, but Iwant to make sure I say welcome. As you probably know there are not many in here with cadasil, just a few of us. I got Dx'd about a year ago.(after 6 years of trying to figure out what I had.) Apparently, my family has a variant strain of the disease, not from the main genetic defect but a variation from a variant gene which can also cause it. We found it during my mother's autopsy. She lived until 94, so we might have the kinder gentler form of cadasil. My older sister's MRI is quite a bit worse than mine or my 2 brothers, but unlike us, she has no symptoms (but she is thick headed anyway,or so we boys say, and wouldn't admit any symptoms if she had any.) Lately, I have been having trouble with my legs and my walking days are probably almost over. I no longer drive (too much dementia for that, plus myoclonus jerking). And the bus service sucks. I thinks my plans for a bicycle are gone too. Hopefully I still be able to garden...I've been planting asparaguses and raspberries this spring. With the fatigue, it has been hard to do.
I also have starting swimming again, working on my butterfly lately, in hopes that I can compete again in some master's meets, but that too is probably wishful thinking. I wish you well, and hope you enjoy your time here.

Hello Carlabag, and welcome to NeuroTalk.

I have to admit that I know nothing about Cadasil, but I did look it up and found that it's :
cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy.

WOW! That sounds like an awful lot to deal with. I send you hugs Carlabag, and hope you'll soon feel quite at home here with us.

I've added the link to our Stroke Forum, hoping that you might pop in there and say hello as well:

http://neurotalk.psychcentral.com/forum23.html

Hi Carla and to NeuroTalk. Like Koala I don't know a lot about your condition but I plan to look it up and familiarize myself about it. I'm glad you found the site and I hope you can connect with others who can give you support and information.

Hi Carlabag! Welcome to NeuroTalk!

I hope you'll find the answers you need, this is a community of caring compassionate folks, feel free to join in anywhere.

Hi Carla-
I just joined myself. I went thru the predective genetic testing in 2005 when we discovered my dad had it after 12 years of not knowing why he was sick. I was 28 when I got tested and had already had 2 children. In many ways, knowing the information at such a young age has enhanced my life and my faith. I know that sounds weird, but I do consider it a blessing to test yourself at such a young age to be sure that you are truly LIVING your priorities and not just saying it. I made big life changes and have been doing well, with the exception of last year. I had been diagnosed with MS in October, in addition to CADASIL. I had two attacks within 8 months, the recent one very severe and was hospitalized. I've thankfully almost fully recovered but continue to struggle with fatigue and some occassional vision disturbances and tingling. I also have Endometriosis and CADASIL severely impacts this because I can't take anything related to hormone therapy because this could increase my risk of stroke. Therefore, after many years of monthly pain (took Percocet all day today! UGH!) I've decided to have a hysterectomy soon.
Although we may feel that there is nothing in regards to treatments for CADASIL, it's also very important to know what NOT to do: birth control, smoking, no over-the-counter cold medicines that contain phenylalanine or anything else that is vasoconstricting. My dad had his 1st stroke at 44 yrs old after having a bad head cold and taking Sudafed. I will never touch the stuff!
Let me know if there is anything I can do to help. And stay positive!
Sarah

hi carla and welcome,

i'm glad you've fount the NT board.
btw, what is CARDISIL?
i know you'll get all kinds of support here.

hope to hear more about you.

Hi, and welcome to NT! This is such a great place with lots of friendly, caring, and helpful people.

We're so glad you found us!

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help, there are a great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

Hi I am a 42 year female, I have been suffering from on going headaches, I have now been for a CT they told I needed to go for a MRI radiologist results have said that o may have extensive cardisal but still waiting to see a neurologist, terrified don't know what to expect


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