Hi guys, does anyone know how long it takes for MM to develop? For example I want to know if it can develop as a child with no symptoms and only come to light in your 30' or 40's. For example in my case, I only found out I had it when I was 38 and had a stroke. Could I have had it and not know it 6 years earlier when I had my first child, or could I just have developed it over a couple of years? Does anyone know? [smiley=huh.gif]
moira

Unfortunately MM is one of those things that the doctors don't know enough about to be sure about. The thing is if you have it now then you need to watch your child just in case. Sometimes children have it when the mother has it, sometimes the mother is the only one in the family to have it. Dang, MM is still too new.

In scotland it's extremely rare for it to be passed down throught the genetic blood lines, I know in that in Japan, they seen to have a stronger stain that we do in Scotland. It can run all through the family over there.  As for the development. the experts are still trying to pin point why certain people get it and some don't. I myself have had it since I was 5ish and no one else in my family has.

aphroditecat, You say you have had MM since you were 5 or 6. How did you know? Did you always have symptoms or when you were finally diagnosed did they give you an idea of how long you may have had it?

That's a good question.  My daughter was diagnosed with moyamoya at 15 months old, after two strokes.  However, we feel she had it since birth - maybe even beginning before birth.   She was very colicky as an infant and started having seizures at three months old.  Her first CT scan showed mildly prominent extra-axial fluid spaces, which we now beleive was early evidence that her brain was losing mass (every imaging study since then has shown the extra-axial fluid spaces getting more prominent) due to lack of blood flow.  

Daphne also had a congenital heart defect that has been linked to moyamoya disease (coarctation of the aorta).

Jenny

Hello. My name is Brad I have moya moya. I was diagnosed when i was 18 late november/early december. I am 19 years. I started having symptoms in november find out i had a stroke. Like written about you can have sysmptoms out of no where or have them over time. I had my symptoms out of no where. Moya Moya is still confusing docotrs every where. Unfortanutly all you can do is have surgery and hope and pray for the best.

Not enough known of MM to have a track record ... simply too many variations from one person to another...I would only imagine one is born with it, has the gene for it that sometime in their life they will be affected by it.  Im pretty sure Cara has had it since birth...though she was adopted so wouldn't say it runs in our family either.  At first the doctor said it may not be full blown (surgery needed) until her 20's or 30's....so we figured we had time on our side....but that wasn't the case...as she had to have surgery at age 6.  Many people never know they have it...simply have a major stroke and pass away.   I read about one female (38yrs old)that was having her ovaries removed but died on the operating table because the asethesologist didn't know she had MM...she had a stroke and went into a coma...the asethesologist asked her parents if they knew she had MM...and they had NO IDEA...had they known ..she'd probably be still alive....so I'm sure there are people out there that have MM but don't know yet.
Like cancer...some spread over a period of years...other spread as fast as "throw a bucket of water".  Varies too much to have some sort of record, diagnosis to compare with other cases....one just has to watch the "signals your body gives", keep up with annual followups...never know if your time with MM is just around the corner or on the other side of the world...but the more you know, the more you are prepared, the better you can deal with it.    :)CarasMOM

My daughter Tara was diagnosed with MM at age 17.  Prior to that, she was diagnosed with migraines at age 6.  Her first MRI (at 17) showed that she had had two small strokes, which were very old, maybe even occurring before she was born.

The bottom line is that we suspect she's had MM most of her life, but we'll never know for sure exactly when it started.

Ditto to what others have said - there's not enough of a MM "track record" to answer your question clearly, Moira.  Everyone seems to have a different story and set of circumstances, and until there's more awareness within the medical profession, we just can't say for sure.

Wish I could offer more of an answer . . . sorry!

Jill

When I was first diagnosed I was told that my MM probably developed when I was a lot younger - that I'd had it a long time but didn't become symptomatic until I was 28.  The thought was due to the extensive collateral vesels that had formed.  Knowing what I know now, I can look back and attribute symptoms of MM way back to when I was 14, at least.  

Bottom line, though, as everyone else has already said - there is still a lot that is unknown about MM, including where it comes from.  

-Shari

Hi Moira

My brother Kevin had a significant stroke at the age of 43.  About 6 months prior to the stroke he had TIA's.  Even after his stroke he wasn't diagnosed with moyamoya.  His doctors, at that time, thought he had FMD but he was later diagnosed with a dissected right upper internal carotid artery.  It wasn't until a year ago (4 years later) that he was actually diagnosed with moyamoya after an angiogram.  Keep in mind, he had several previous angiograms that did not indicate moyamoya vessels.  As you have read from  others, it is different for everyone.  Statistically, from present data, which I believe is changing rapidly, the majority of MM cases show up in the first and fourth decade of life.  Additionally, there are always those cases wherein MM may be present but simply not diagnosed because  its rare and therefore, unknown to some doctors.  MM continues  to be mysterious in many ways. Perhaps someday soon we will know more as the word of MM travels.

Lore

 

Hi Aphrodite-Cat,

One question since you had it since 5, how are you being treated. Did you have surgery? Any more sypmtoms?

Thanks for your information.

itsme