Welcome to the MM family, sorry you need it but it's a great site to get information and support. My daghter was diagnosed with MM at 5 yrs old so our experience is a bit different but I think everyone here would agree that the best thing you can do for yourself is to consult with a MM specialist. There is a lot of information on this site in regards to the specialists. Dr. Steinburgh in California is top on the list for adults. You can have your scans sent to his office. My daughter's surgeon was Dr. Scott in Boston and our neurologist here had no problem sending her scans to Boston and then referring us there for surgery. You need and you deserve a surgeon who treats patients with MM on a regular basis. You are absolutely right no one of any age should just sit back and worry about when  stroke may occure without consulting an expert. Reccomendations that were given to my daughter were to stay well hydrated, not to hyperventilate, and a baby asprin daily. You would not want to take anything that has side affects of stroke or vascular constriction (birth control is one that comes to mind).  As for your children... There are different opinions on this I believe but I believe most of us have been told not to worry about it being genetic unless you see signs of a problem. On the other hand there have been multiple family members so I would not hesitate to take action if you saw a problem. Remember that no question is too small ask away and there's usually someone here who can answer it. Please keep us posted. Many prayers for you and your family.
Mary Grace

Thank you for both of your comments...

Just started experiencing a buzzing noise in my head/ears that is accompanied by a dull headache....
Going on two full days...

So hard to figure out what is "important enough" to visit the doctor right away and what might just be caused by anxiety....
Trying so hard to remain calm until I hear back from dr. Steinberg's office....

How are you doing??  I just read your new symptoms. With this disease there are so many unkown issues and everyone is so different I would never hesitate to put a call in to your dr. or visit the ER if it's really bothersome.
Mary Grace

Believe in yourself, you are strong, you have come this far and you have an awesome support group here on MoyaMoya.  I think your doing all the right things.  Hang in there and we'll be thinking of you.

Hillary

Hello- I just want to give you support. i know how you're feeling. Me too, just diagnosed but asked for more time. i do have to say, Dr. Steinberg's team are very professional and the entire staff. The hospital has been rated the best in the world as to treating MoyaMoya.
I've completed the tests to be sure, since I was first diagnosed with vasculitis, and i wanted a second opinion.
You will be find with this group of doctors at Stanford. Good luck.

You hang in there. I know having to do all the tests, is very stressful, which I found out. But I know that it's better to do the tests to make sure that it is what the doctors diagnosed it.

It's ok to be scared because you really don't know what it is. It's good to educate yourself with Moya Moya. it actually prepares you. Dr Steinberg has the website that tells you everything about it.

Once you have educated yourself, get your support from family and friends. You become a strong person.

BTW, the ringing in your ears is due to lack of blood and oxygen to the brain. I know that because I became anemic, had blood transfusion and that's what they told me. You can get this because your menstrating. If so, get your blood level check. Because you can be low and you may have a stroke.

Just write everything down that you are experiencing. Good Luck!! keep us posted..

JSKL,

I had a CT Angiography of my head to measure the blood flow. I also had CT scans with and without dye.

In regards to physical activity. What do you do now? I was a walker training for a half marathon. I didn't feel symptoms unless I got dehydrated and went farther than four miles. Drink plenty of water. Walk with common sense. I was able to walk four miles at a slower pace.

There are several research studies on genetics. I have been advise to notify our physician and let them know for my son and daughters records. If they begin to have any symptoms then we should check. From what I have read only 15% of families have seen moyamoya in the family.

I would not wait for a stroke. It sounds like you are doing what you should be doing by checking into other Doctors.

Hang in there you, keep asking questions. If you need anything else let us know.

Liz