I was diagnosed with MM at the age of 41 after probably 7 or 8 strokes. Tested for everything else in the world,my neurologist finally sent me to a neurovascular surgeon,and he performed the angiogram.
Dreamcatcher
Am I too late to vote ? 

I was diagnosed at age 42 (three days after a stroke), I am also Japanese.

Jan

I was diagnosised at age 31.

I had all the symptoms of depression, black outs. severe headaches. I had minor TIA'd that did not registor on the arteriogram and the diamox spect tests. The doctors put me on prozac. I the had a severe earache and the doctors did and MRI/MRA and found out that my symptoms were caused by my moyamoya. I no longer suffer from those symptoms anymore.

DJ, the poll will be an amazing resource for researchers and inflicted families, as there have not been significant amount of studies about MM around.  In addition to the age of dx, gender, race and ethnicity (how much of the population is Asian decent), if they have any other family members with MM would be the basic demographic questions that will be very useful.  Are you going to have it pop up every time someone logs in? 

Alexis

Hi Gang,

I was diagnosed with MM at the age of 46.  I am a female Navajo Indian originally from New Mexico but I live in Oceanside, CA.  I had 2 TIAs on 5/30/05.  I was misdiagnosed with MS (in Jun 05) prior to being diagnosed with MM in Aug 05.  THEN, I sent my angio films to Dr. Steinberg and he and his team disgnosed decided I have a rare form of MM Variance (not classic MM).  I am hoping to schedule surgery with Dr. Steinberg in March 06.  The "treatment" I've been on in 325 mg Aspirin and Depakote for headaches/migraines.    -Lee-

Oct 25 2003, age 22 stroke
Dignosed MM six mounts later
STA-MCA surgery Sep 22 2004, age 23
Whole life mild headackes,
Prior to stroke major migraine, migrains proceded stroke and surgery.
Medacations: was on Topamax and Prozac now tapering off, Still on 81mg asprin and a progestrgen(sp?) only Birth control. and I take Minquin when I have a migraine, which is now very rare.
For ethnisity I am Caucatuion (sp?) "White" Born and raised in MN, USA.
I am now 25
Becky

I was diagnosed in 1992 though I don't quite remember the actual month.  I was 11/12 years old at the time.  I had my first surgery Aug, 1992 and had the second surgery Sept, 1992.

I've had probably 3 TIAs prior to being diagnosed and had another TIA during one of tests to determine if I had MM.  That was the scariest thing that I have ever went through.

Prior to the sugeries, I've always had terrible headaches though now I've been pretty much free of headaches. 

DJ thanks for putting up the site!  I didn't know there are so many people with MM.  I think it's great that we all have support for one another.

   I was diagnosed October 2004, had bypass surgery Dec 04, suffered a stroke, then next surgeries were July 06, and Oct 05.

Emma

Diagnosed 15 years after what I remember must've been my first TIA or TIA like symptoms.  I was really young when I remember crying on the bathroom floor and people getting mad at me because I wasn't talking coherently and my words were a bunch of gibberish.... My arm and leg were out of control and I just didn't feel right.  Not until over a decade later after having been through doctors and doctors and finally deciding that I needed to see whatever specialists necessary was I diagnosed.

I had a major Stroke (left side paralized) when I was 47 was DXed w/mm at 48 during 1st brain surgery I am cacaussian no family history of MM or Strokes,,,,,,,,,,,This is a good idea for everyone to put age and authenithy (sorry for the spelling)

Hello everyone, I am so glad you are all here to get advice from.  I am 28 and just diagnosed with MM.  The thing I don't understand is everyone or almost everyone on here has some kind of sympthoms or something to idicate that there is something wrong.  The reason that they found my MM was by mistake,  I had be diagnosed with migrain headaches since I was 3 and they, went  away and after I had my first child they started to come back, and they said it was because of the hormones.  Well to put it in short version they found MM and I am really scared..

I was 34 when i was diagnosed with MM. But they did trace it back that my father is the carrier too the MM gene because of his background of American Indian..Apache on his fathers side and Cherokee on his mothers side.Now since i have 11 strokes and 3 seizures.

Laura

     the more I read the more diversity of symptoms,or lack of in some cases, I see.In hindsight there were some very very small signs in Kathleen(she was almost 5 at the times),but I would say only a month or so in advance of her first stroke.I think the fact that she also has Down Syndrome made it a little more difficult to see.The first sign would be that her PT noticed that she was walking different in that she was "slapping" her feet harder KWIM? Then one day at Pre School the teacher said she was very tired in fact she was sitting at circle time and put ehr head down and as they said "she didn't come back up she was asleep".I know now that this was probably an "episode" of some sort but who'de of known at the time especially people who aren't used to seeing Kathleen.Then, around Christmas time I noticed that whne I dressed her she was hanging onto me so hard like she was afraid she was going to fall.I would try to tell her to let go she can stand on her own but she insisted(now theres some real mommy guilt left over that I must say).This progressed to her being wobbly walking,and jsut standing still sometimtimes.I thought at that point she had an inner ear problem and we went to the Dr.She didn't so they tested her thyroid(this can cause you to be off balance).finally what really got my attenetion and theirs was when she had a hard time using one arm and then wouldn't stand up this is when we took her to the ER.By the next day she coyuldn't even sit up.She then had several more seriouse strokes.the progress of this disease seems as diverse as the onset on different people.She went down hill in a matter of a few months some can live practically symptome free for  years.Will the medical profession ever get answers about this disease?
Mary Grace