ok i've read back a bit and can't find anything on this....

is there any findings/opinions etc.. on when moyamoya was contracted by all of us?

born with it?

born with it and/or didn't become "active" until later in life?

contracted spontaneously later in life?

contracted spontaneously by certain individuals with susceptibility for mm?

any facts/ideas/opinions? have there been studies on it?

Hi Emily,
I haven't been able to find out where mine came from, but my personal belief was years on birth control pills, as I do not remember having any abnormal problems as a child. I have experienced headaches in my adult life but I put that down to working closely, as I am a draftswoman by trade.
I don't believe they will "admit" that birth control has caused this, and I have just drawn my own opinion, as, when I was first diagnosed, my brother-in-law found some info on the net which stated that possible cause in adult females was cocaine abuse or birth control and I have definately never snorted cocaine but have been on birth control for about 20 years before having Cayle!!
There could be many factors involved with one contracting MM, and maybe someone else can throw some more light on the subject
Good luck for your surgery next week.
Moira

hmmmmm well i have been on birth control pills, for mayb a year in total on and off..... so i doubt that mine could come from that..
i also doubt that i was born with it.. as up to a few years ago i was an elite weight-lifter.... just the strenous nature of that sport would surely have caused my problems to arise much earlier and probably of a very severe nature if i had MM at the time?

and also the speed at which it progressed from my first symptom for the next month.... seems to me like it would have started pretty recently??

interested to hear other people's opinions..

I was on Birth Control pills prior to my being diagnosed.  Both my neurologist and my surgeon, Dr. Scott, dont think it was caused by the birth control pills.  However, there is a strong association between stroke and the pill.  Anyway, my neurologist thought I probably have had MM for a very long time due to the extensive amount of collateral vessels that had formed.  It was just that I started becoming symptomatic at the time of my diagosis around 2 years ago.

-Shari

Sorry...I've never been on birth control pills, so the reason for me "contracting MM" can't be attributed to that.  I think I'm safe on speaking on Kevin, DJ, Tom and Greg's behalf too.  ;)

Also wanted to clarify that I have also never tried/done cocaine either...

Well, I can't say much.  As I young child I suffered a couple of seizures due to very high fever from pneumonia.  While I was in elementary school and throughout the duration of my life I have been plagued by migraine headaches   [smiley=bash.gif] [smiley=hammer.gif]. While I was in high school, my aunt suffered an anuerysm and survived.  I was on birth control for approx. 15 years and did not suffer any ill effects from it...had to stop we were trying to start a family (okay, so it didn't happen, we were bummed out [smiley=youknow.gif] :-[).  So I'm not sure if mine is hereditary or not   [smiley=huh.gif].  I guess there is no answer to this question after all...
Just so all of you know,I havenever done cocaine.  NEVER DID....NEVER WILL!! [smiley=smug.gif]

Jan

Hi Emily,

I have read several different articles/reports about the cause of Moyamoya and what I found, for the most part, is  the cause of MM is unknown and that 10% of MM cases are due to a genetic cause and are termed primary MM syndrome. Secondary MM syndrome refers to cases in which the syndrome is a consequence or result of another underlying disorder.

The genetic link is because of the 9% incidence of the disease found in certain Japanese families. I read where a gene for familial moyamoya disease has been located on chromosome 17q25 and further study of the gene may reveal the cause of the disorder. I also read The disease is believed to be hereditary;Fukui (1977) reported a history in 10% of patients.

MMD is being found in other countries such as Australia, The United States, Netherlands, England, Germany etc.

University of California, San Francisco reports "although the cause of moyamoya is unknown, Japanese and Korean children and those with other disorders such as Down's syndrome, neurofobromatosis, and tuberous sclerosis are more frequently affected".

Additionally, I read a report by Dr. Roy Sucholeiki, MD that states "The exact etiology of MMD is unknown. The disease may be hereditary and multifactorial."

"It may occur by itself in a previously healthy individual. However, many disease states have been reported in association with MMD, which may be coincidental, but can complicate management, including the following":

Immunological: Graves disease/thyrotoxicosis

Infections - Leptospirosis and tuberculosis

Hematologic disorders - Aplastic anemia, Fanconi anemia, sickle cell anemia, and lupus anticoagulant

Congenital syndromes - Apert syndrome, Down syndrome, Marfan syndrome, tuberous sclerosis, Turner syn von Recklinghausen disease and Hirschsprung disease

Vascular diseases - Atherosclerotic disease, coarctation of the aorta and fibromuscular dysplasia, cranial trauma radiation injury, parasellar tumors and hypertension

After Kevin (Cubbie) had is stroke, he was diagnosed with fibromuscular dysplasia (FMD). He saw a FMD specialist who said he didn't have FMD.  Of course we also went through numerous neurosurgeons, vascular surgeons and radiologist who didn't know what moyamoya was and couldn't identify it on an angio gram. So that is why Kevin went misdiagnosed and undiagnosed for 4 years. Kevin does have a dissected right upper internal carotid artery at the bifurcation. He also has hypertension. However, Kevin is not of Asian decent. So I guess I really don't know the actual cause of Kevin's MM. It may be a  result of one or several underlying conditions or possibly genetic.

Kevin mentioned that when he was in his 30's he began to feel tingling and numbness in his extremities. He though nothing about it since it would go away and was not crippling or dibilitating.  At age 43, Kevin had a significant stroke then went misdiagnosed and undiagnosed for 4 years. Kevin is probably one of the older MM victims on this board. I read where MM can affect infants and people as old as 67 and everything in between.

I suspect as more and more people are diagnosed with MM the statistics will change as time goes by and more studies are performed.

I hope this is of some help to you. There is not much information about the cause since  for the most part the cause is unknown.

Hugs,

Lore

 
 

Emily,

My daughter was diagnosed with MM at around fifteen months old, after suffering two strokes.  She seemed like a "perfectly normal" baby at birth ... she actually seemed advanced to me.  She was very social, extremely attentive and had better than normal head control and muscle strength.  Then, at around three months old, she developed a catastrophic seizure disorder.  We spend almost a year trying to figure out what was causing the seizures, and trying to control them.  She regressed -- stopped making eye contact, didn't smile, lost muscle control, vision etc.

Daphne was also diagnosed with a heart defect, when she was about nine months old.  Her aortic arch was narrowed/occluded (probably related to the MM)

Anyway, when she finally had her surgery for her heart defect at around fourteen months old, she had two strokes a couple of weeks later, and they found she had severe MM disease.  We were told she'd probably die within a couple of weeks, but we never gave up on her.

She had surgery at Stanford (in March) about a month after her strokes, and has done sooooo well.   Her revascularization was amazing, and she now moves every limb almost equally -- people who see her realize she's way behind her peers, but can't believe all that she's been through.

Dr. Steinberg and team believe that Daphne probably had MM in utero.   But I think she's an unusual case.  From what I've been told, it can develop at any time, and is probably due to some genetic predetermination (probably environmental factors can contribute, too -- who knows).

Before Daphne, I'd been on BC pills for about five or six years without any  incident (I did concieve daphne within a week or two of going off the pill).  But my mom and many other close female relatives have been on the pill without any problems, and with perfectly healthy children.

Jenny

Emily:

All the doctors I've consulted regarding moyamoya agree that I've had it quite some time, probably since childhood.  However, I personally believe that certain things trigger it -- in my case, I started on BC pills four years ago (had to stop 2 months later as they were unbearable for me).  My visible symptoms started right after that, but they were misdiagnosed as anxiety at the time.  I also went to donate blood a year ago and after I passed out and went into convulsions (survived fine afterwards, they just said don't ever come back :) ), my symptoms increased.  

So, while I am not sure BC is a cause, I feel in my case it did 'activate' my moya moya.  As we know, BC shouldn't be taken by stroke prone patients anyway.  

Just another side of the story.  :)  Keep smiling! You have an excellent attitude.  

Trina

Shan,

Thanks for including me in that list.....other than one time in college...I can honestly say that I have never been on the pill....FYI I was kidding about the college part.

Thanks,
Greg

You ask a good question - how is MM contracted?  I wish I knew that as well.   My daughter has had transient symptoms for about 2 years - mostly on the right side for one year and then on the left for the last year.

She started on birth control in October 2005 to try to regulate her menstral flow.  Within 2-3 weeks her symptoms became much worse and more frequent.  Then she had a stroke and has since been diagnosed with MM.  

Everything I read talks about Asian descent.  I don't know of any ancestory within my family or her dad's that is Asian.  My thought is that maybe there is simply a higher incidence of the disease in Asian countries because it is identified and diagnosed more often in Japan.  I have a feeling there is a much higher incidence in the US but that it is often misdiagnosed.

I pray that we can all be a part of the information sharing so that individuals don't have to go through a major stroke to finally be diagnosed.

melinda wrote on Nov 28^th, 2005 at 4:20pm:

My thought is that maybe there is simply a higher incidence of the disease in Asian countries because it is identified and diagnosed more often in Japan.  I have a feeling there is a much higher incidence in the US but that it is often misdiagnosed.

Excellent point Melinda and one that is talked about here often.  I believe the data from this site (approx 350 patients in the age poll) proves the original estimation of 1 in 2,000,000 in this country to be low specifically because it is misdiagnosed so often.

Hopefully, we can continue to raise awareness in the medical community getting MM patients help before major, unnecessary damage is suffered from a disease that is treatable.

Thank you for your post!

[smiley=hug.gif]

Trey had his first stroke when he was 7 months old and his second when he was almost 10 months old.  They did the further tests to determine MM after his second stroke.  Before the strokes and now even he was doing great and progressing well.  Now due to the strokes he is hemaplegic on his left side, but still is doing well and going through therapy.

Any tests for any other illnesses or diseases have come back negative.  He is 2 1/2 now and doing great.

There is no family history of MM or even strokes.  I have a history of headaches and miagraines.  I was on the pill before getting pregnant with him, I had been on it for a few years on and off.  Other than that, I have a thyroid problem that I treat with medication and at the time of conception and until about a year ago I was taking Atenelol for increased heart rate due to my thyroid.  I was told though that there is no link between my thyroid problems and medicine or my (past) use of Atenelol linked to MM.  My husband has two children prior to us having Trey and they are perfectly fine with no problems or complaints.

Michell

I haven't been able to find out the origin of my MM.

But for all my life when any nurse/doctor has wanted to take blood for tests, they have had an extreemly difficult time finding a vein in my arms. In the hospital when I had my stroke they keeped having to move the IV every day because it would get so irritated and brused. I was on cumiden for a while after that and the INR nurse hated drawing blood because they could never find a good enought vein to get anything out of.

I have also had bad headaces ever since I can remember, but never migraines up to just before my stroke. I had a progressively worsing migraine untill I stroked out.

I have also been on an estrogen based pill to regulate my cycles since I was 13. Now I am on a Progestrgen (sp?) or fake estrogen pill. The people I saw at the Mayo Clinic said that any pill estrogen based or not shouldn't have caused MM.

Hope this helps.
Becky