Hi Mar,

The article is very interesting and I too am anxious for the genetic research study results.

CCM seems very similar to MMD with weak and thinner vessels.  The difference is the appearance of the vessels in CCM in that they are honeycomb - like pattern and the collateral vessels in MMD have the appearnace of a puff of smoke.

I support the idea of annual testing for those with MMD and especially after reading the article.

I wonder if those having MMD who have been informed they have MMD elsewhere like in the neck if it isn't CCM?
Don't know - just guessing.

Thanks for sharing such an interesting article.  I print articles such as this and place them in a folder for Kevin just in case we find ourselves in a situation like before wherein the doc said he had never seen anything like it meaning the collateral vessels and the puff of smoke.  However, today, if that happened, I would immediately call Dr. Steinberg.

Hugs,

Lore

VERY interesting article,thanks for posting it. I'm kind of questioning now if Kathleen should have a yearly MRI still.Dr. Scott hasn't suggested one for 2 yrs now.Lore that's a great idea to print up articles like this and keep them in a folder.Even though Kathleen seems very healthy right now It's always in the back of my head that this could change at any moment.It doesn't rule our life anymore but I don't think it will ever go away completely.There's just so much unknown about this disease.I can't wait till the research study is completed too! We have a lot of neurovascular issues in my family background.This could all prove very interesting to my whole family.Thanks again Mar for the article!
Mary Grace