Hi, I am a new member from Moss in Norway. I am sorry, but my English is not so good, but I try....
I got the diagnosis Moyamoya for about 3 years ago I think. I am adopted from South Korea, and in my paper I was in ok health. No record said nothing about my biological parents. or my mother suffered from polio. In my childhood I had much headace with vomiting and nausia. And I feel myself "strange". Migraine  was the result in several years. So suddenly when I took Doppler, something was wrong the doctors said. At Rikshospitalet (A hospital with the highest(?) competence in Norway) they took angiography. And then, I got MM. But they said I was born with it probebly. But fint it out at age 28. As many of you maybe feel alone with this syndrom/illness, I do it! I do not know how many in Norway, but a few is it.  I do not know who. But I wonder, how to live a life wich good with MM? Is it only me that is afraid to walk out alone, because I do not know when the next TIA come? I do go out alone, but I don`t like it. What do you do, to be safe if you got an attack? Headache is a very problem for me.How to accept it? What to do? I hope I in a couple of month get a bypass in Switserland,because thats a good place/hospital in Europe. It is very little competanse in Norway at MM, so I am allowed to be treated abroad, outside of Norway. I hope I got a date for the bypass soon....I feel so alone in little Norway, so I hope you in USA and other, can get me some information about MM, and people who understand me and my problems with MM. What do you when you have problem talking right/speaking problems? Sometimes I can write, but if I am paralyzed too, that is a big problem. Have you some advise to me? Please write. Thank you. I live alone in a flat. Much time to think...No work, have public assistanse. Feel lonely with much questions. It will be good to have this site at Internett. I have been here before, but only read for a while ago. You do a great job DJ! Goodby for this first time, hope some will answear me!? F.ex. is it other adopted people? But all can write to me! Good night! It is nearly 05am in the morning here in Norway.        Norway :)

Hi Norway...

Welcome to this wonderful site.  I happened to find it as I was looking on the internet for any information I could find on MM.  I was diagnosed in May and had a double bypass 2 days later on my right side.  Unfortunately, there wasn't anyone in the state where I live who could provide me the necessary medical attention I needed, so I too had to travel out of state.  I chose to seek advice from an expert who treats MM and other neurological diseases in North Carolina, so I know how you feel about not being able to get the necessary treatment you need readily available to you in your home town.  I think there are many of us here just like you.  

As you read through the other posts, the one thing you'll notice that is repeated over and over, is the importance of seeking advice from a MM specialist/expert.  I've come to learn that there may be many medical professionals that "know" of the disease, but not many that have experience actually performing the necessary surgery(s) needed, or the necessary experience actually treating the disease (pre and post operatively).  I didn't quite understand it in the beginning, but now it's clear... ;)  I've also come to learn, especially from my own experiences, that 2nd and 3rd opinions are also not a bad idea...(in my case, it saved my life  ;))!

I'm just so glad that the doctors in Norway listened to your concerns and ordered the proper tests...and even diagnosed you as having MM!  Just imagine if they didn't even know what MM was! :o  At least they could recognize the symptoms, etc.  Have they prescribed any medications to you in the meantime?  It was also pleasing to read that you are able to receive the medical attention (surgery) you need in Switzerland.  If you don't hear from them soon, please give them a call and confirm a date with them.

Even if you don't know anyone else with this disease in Norway, please know that you have all of us here to support you. ;;D I know it's scary at times, and I too have fear and anxiety about when my next TIA will happen, etc., but I'm trying my best to not worry about the things I cannot control...easier said than done.  ;)

DJ has done a great job with this website in providing information about MM!  You can also click on the "Links" section above for more info.  I also greatly value and appreciate everyone's posts.  Learning from other's experiences also gives me insight, comfort and understanding of what I have/am going through.  There are many that have gone before me, and many after me.  I'm just grateful that I'm able to be a part of this wonderful network to share my experiences with others.

Please know that you are NOT alone! We are all in this together to offer support, comfort, etc.. If you have any questions or just need a shoulder to lean on, we're here for you...  [smiley=hug.gif]  Please keep us posted on your progress...

Take care,
Shan

Dearest Norway!

I am so sorry to hear all that you have been through! I hope that you can have the durgery soon. I think you will feel much better after surgery. Do you have a scheduled date for the surgery? I am Irish/German and the doctors son't know why I have it. It may be from other causes than from your birth parents.

Moyamoya is a progressive disease. You need to have surgery quickly so you can get blood flow to your brain. Put pressure on the doctors to get you helped.

We all know how scary it is when you can't write, talk, type, drink, etc...  After surgery, it DOES get better.

Keep your chin up and we will all me thinking of you!

Sara

Hi Norway,

I was just thinking of you and wondering if you heard anything about your upcoming surgery.  Has any date been set?  I know I mentioned before how important it is to obtain opinions from MM specialists, even if they include doctors in the U.S.  Just wondering, is traveling to the U.S. for your surgery an option?  You may want to PM Monica who recently traveled to Stanford from Germany for her surgery.  It seems like some of us, even from abroad, are considering traveling to MM specialists as I read more posts.  I also wanted to share this article about a woman who traveled from Greece to Virgina for her surgery.  It wasn't for MM, but nonetheless, it was to seek the necessary medical attention she couldn't receive in her hometown.  (It hits home for me because I was not able to get the necessary surgery I needed where I live  :-[)http://www.ia.wvu.edu/~magazine/issues/summer2004/htmlfiles/hope.html

Remember to keep on top of your doctors regarding your surgery date.  

We're thinking of you...and don't want you to feel all alone.  [smiley=hug.gif]

Take care,
Shan