Tonight I did a Google search on Moya Moya Disease basically just to look for any new(er) info on MM.  While I did find a lot more info and interesting articles regarding the disease than I had seen in the past, I never did come across a link to this message board.  [smiley=huh.gif] (Side note- DJ what can you do about this?)

So, I was just curious, how did everyone find this board?

My response- I was lucky that I "found" DJ before he even started this board!  [smiley=hug.gif]

Lisa

Try doing a Google search for "Moyamoya disease", with no space in Moyamoya.  That brings up several links to the site...

[smiley=smokin.gif]

I just did a Google search on Moyamoya and found the board, how ever I can't remember if I thyped it as one word or two  :-/. Maybe I did it both ways.

My family found it through the internet somehow we were so out of our mind at the time and would never even leave the hospital to do it within 2 or 3 hours my family was there with quite alot of pages on MM. They found D.J. Probably through Google.
                                         Nancy

my sister in law found it and showed it to me.  wish I would have found it sooner

I found it through Googles, AltaVista or some other searchsite. I found it just after DJ started it as I was hungry for info and on the internet daily and all of a sudden it was just there! Heureka!! Made and makes a lot of difference to me and my family!

Annica

Okay, tried the search with just moyamoya disease and still didn't get it.  I don't know why- probably just me. :-/

But then I got to thinking again!  [smiley=nono.gif] Why is the name varied so much?  I did research and everywhere I looked it was spelled/coined differently.  Moya Moya, MoyaMoya, moyamoya.  Even on ONE article I read they spelled it 3 different ways!   Dr. Steinberg even writes it different ways.  No wonder no one knows much about this disease- they still have yet to figure out the exact thing to call it! :)

Then, of course, you've got MM Disease and Syndrome or just plain MM.  I once heard the difference between "disease" and "syndrome" was that one was idiopathic (meaning there was no found source of why) and that the other meant that the MM was a link to something else (like Down's, injury, Sickle Cell etc.).  I can't remember which meant what though.  Anybody?

One thing I found, at least since I was diagnosed 2 years ago, there is A LOT more info out there than before!  Some of it wrong and a lot of it very confusing, but nonetheless, more info!  That's a good thing!
[smiley=laugh.gif]

Lisa

Hhmmm, can't figure out why it's not comming up for you. I did a search, earlier today, for Moyamoya and it popped up with-in the first few chioces. When I spelled it as 2 words however, it never showed this group.

I found this website on Google as well. A awesome site!

matt_kenny

I just typed it in Google as "Moya Moya disease" and it is on page 2 of 10 that it pulls up as results...

I think I originally found it that way, too....

And I agree, a lot of what you read isn't right, and they make it sound TERRIBLE. Not that it is a cake walk, but it is scary if you've just been dx.

:) Sara

My sister told me about it in an e-mail to a bunch of us right around when they decided to schedule her surgeries.

I just typed "moyamoya" without the quotes into google, and it came up as the third link.  It was on the first page of 10 links . . . out of "about 61,600 for moyamoya."

Maybe it depends on the computer?  Not sure if there's a way to change search settings in google's main screen.

Diane