NeuroTalk Support Groups - New Cadisal Member

NeuroTalk Support Groups (https://www.neurotalk.org/)

- New Member Introductions (https://www.neurotalk.org/new-member-introductions/)

- - New Cadisal Member (https://www.neurotalk.org/new-member-introductions/31377-cadisal.html)

Hi there, I am new to the community and just read your message (from 2007, I believe). I was recently diagnosed with Cadasil, am 34 year old female from California. My dad has a major stroke last Nov.

Did your brother ever go to the Mayo Clinic? Any new information available to you or you family? Did you yourself get tested?

My family members are choosing to be tested for these reasons:

1. It's essential to be on the correct medicine, pre or post stroke. Many medications that are used in stroke care are contraindicated (bad) for Cadasil patients - namely, TPA (this is the shot given within 3 hours of onset of stroke to reverse symptoms), and Coumadin, an anticoagulent. Both of these medications can cause microbleeds in the brains of Cadasil patients, since the small blood vessels are already fragile. Anti-platelet medications, not anti-coagulents, are the appropriate medications. Most doctors don't know this about Cadasil, since it's so rare. (My dad was on the wrong medication for 5 months.)

2. Also, if one does have Cadasil, at least he/she can begin an aspirin regime or other medication to help prevent (or delay) strokes in the future. I'm currently on 325 mg aspirin, however, my doctor wants me to start Aggrenox.

Blessings to you and your family.
Carla

Quote:

Originally Posted by michael178 (Post 163757)

I am sorry to hear about your Dx of cadasil. I found out when the Univ of Maryland Brain Bank did an autopsy on my mother. The geneticists at OHSU in Portland then concluded that I and my brother had a variant of Cadasil. The genetic lab at the U of Wash came to the same conclusion. My brother I then sent our medical info to NIH, and they agreed..so I accepted the Dx, however, my current neurologist does not. She says I show no signs of stroke and I do not have migranes, so she thinks it is some other type of leukodystrophy. My brother has an appointment in Jan with a supposed Cadasil expert at the Mayo Clinic, and I am anxious to hear what he learns.
Since the DNA test for Cadsail is not covered by medicare I decided not to pay. I had other things to spend the money on. Have you had the test?
How did they determine that you have cadasil?
Good luck to you.
"Together we have hope" is a website devoted to cadasil. The site maintain a list of doctors who have some experience with the disease. But I always felt that anyone who has experience with vascular dementia, already knows as much as anybody can expect and since there are no treatments for disease, all you can do is get someone to treat the symptoms anyway, and the symptoms are common neurological symptoms...so why go looking for someone who knows the disease. It is a genetic disease, and neurologists don't get much, in any, genetic education.

michael,

I hear you and I like your attitude.

I am of the same opinion. However, I was diagnosed with CADASIL. no one in my family ever has had cadasil- parents, both set of gradparents , any of the relatives.

now the doctors say they will want to test my kids. I am against it. what would they do by testing. The kids will become a research study.
Is it not enough that i am a research study for the doctors.

There is little anyone can do for this disease. I refuse to believe I have this disease. I run marathons and go for bike rides as if there is a brighter day ahead and living my life to the fullest.

death if at all will come whenever it has to come.

live life. Do not be afraid.

--marathonman

http://i489.photobucket.com/albums/r...totheGroup.jpg

Hello Amy, and welcome to NeuroTalk!

I had never heard of cadasil before, but I have MS and I wanted to welcome you to visit our MS forum and The Stumble Inn.

http://neurotalk.psychcentral.com/forum17.html

http://neurotalk.psychcentral.com/forum102.html

We're so glad you found us! :D

Quote:

Originally Posted by Darlene (Post 163831)

Amy,

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.

I see Alffe has given you our link to cadisal.

Again welcome, looking forward to seeing you around.

Darlene:hug:

HI, THANKS FOR THE LOVELY WELCOME. i NEED TO KNOW AS MUCH AS POSSIBLE ABOUT cADISAL AS MY HUSBAND HAS JUST BEED DIAG. WITH IT.jOYCE

Hi There,

I would like to find out more about Cadisal. My wife's mom died at around 40-45 as did her brother at around the same age. My wife is now 40 and I am seeing some negative behavoural changes in her. It could be a number of things but I would like to know more about the known sypotoms of Cadisal. Can you help me.