Hello everyone!  I'm Mike, a college student in Ithaca, NY working towards my degree in Music Education and voice performance!  I was just diagnosed with Moya Moya a few weeks ago, and have gotten a lot of help already from just reading these boards!  So, thank you!  I had a kind of weird question.  Along with the Moya Moya, I have this horrible rash that I got from a moshi pillow which ripped open and the polystyrene beads that are inside of it got all over me, and I was obviously allergic (Long story!) Haha.. This rash has been with me for 2 months now.  I am so itchy that I can't sleep, do my work, nothing.  My family and I cannot help but think "does this have anything to do with the Moya Moya?"  I know its far fetched, but who knows.  Even my doctor here at college was wondering if it had anything to do with it.  Before this, about a year ago, I had a terrible cold that did not get kicked out of my system for almost a year!  It was horrible.  And then, this summer, when I went for my yearly Dental check up, my gums started bleeding, and they didnt stop bleeding for over a week.  What is up with this?  So, I guess all I'm asking is.. have any of you had trouble fighting off illnesses?  I know it's probably far fetched, but just figured I'd ask!  What a great community we have here!  Thanks 

Hi, and welcome to our family!  I'm sorry that MM brought you here (like the rest of us), but you will find that this is a great place to be.

I am the mom of an 18 year old girl who was diagnosed and had her surgeries at age 17.  We felt very blessed to be able to take care of the problem before a catastrophic event, such as a stroke or hemorrhage, occurred.  Tara had had 2 small strokes at a very young age, but they were so small, we were completely unaware they had happened.  Today, she is doing very well in her freshman year of college, and having resumed almost all of her normal activities.

Unfortunately, I'm not able to respond to your questions about rash/allergies from personal experience.  Have you been on any type of blood thinner (aspirin, etc.)?  That could explain the bleeding, but it does sound excessive, and I don't know if it's related.

Lots of questions:  I know you just received your diagnosis . . . do you know what your plans are?  Surgery?  Are your doctors familiar with MM?  It is VERY important that you have someone treating you who is experienced with the disease and sees it on a daily basis - not just someone who has read about it.  Much of the medical profession is not very well educated about it, which is something we hope to change as time goes on.  You will see as you read up about MM, that it is not a "wait and see" disease.  Especially if you are fortunate enough to have caught it before having a stroke, swift action is recommended.

Please don't hesitate to continue asking questions here.  There are many people who are anxious to offer their support and to share what they've learned through their own personal experiences.  I'd love to hear more about you . . . again, welcome to the family!

Warmly,
Jill

Hi Mike,

Thank you for sharing some of your history with your newly acquired family here at mm.com!  I am glad to hear you had a good recovery from the first stroke; my gosh, you and your family must have been terrified.  And even though it didn't come until you had a second stroke, I'm glad that you have finally have a diagnosis.

Good luck as you plough through the MM info, educate yourself and your family and "weed this all out".  I'm hoping your insurance will allow you to get to a specialist with this disease.  There are a couple of people on this site who are VERY experienced with insurance issues, so if you come up against problems, this is a good place for advice for that, too.

I'm glad to hear that your spirits are high . . . MM is treatable, and definitely not a death sentence!  You sound like the kind of person who will do what they need to do, then get on with their life . . . good for you!  You will be added to my prayers, and please keep the questions coming!

from California,
Jill

P.S.  I know what you mean about people thinking you're crazy for returning to school a week after your stroke.  My daughter started summer school 5 days after getting home from her second surgery - we thought she was crazy, too, but she was very determined!  We were astounded when she not only finished, but had an 'A' in the class!

Welcome Mike,

Wow!! Have you had a time of it. You have come to the right place to educate yourself about moyamoya. There is a wealth of information on this board.

My brother Kevin (Cubbie) has moyamoya. He too, like many on this board, went undiagnosed for almost 4 years after a significant stroke that affected his speech and abstract thinking. After contacting many medical facilities and getting turned away, we found MM.COM and found Dr. Steinberg at Stanford who is a MM specialist. He performed two direct bypasses on Kevin in May of this year. Kevin is doing very well and we are grateful for the second chance at life. Kevin was in pretty bad shape when we got to Stanford. His ears were purple, his skin gray, his speech was worsening and he was off balance. It's amazing to me that Kevin is doing so well since the surgeries.

As far as rashes go, Kevin has never had that. He did have an allergic reaction to a medicine. He would bleed and bruise easily only because he was on blood thinner at the time. Since the surgeries, he is only on aspirin as a blood thinner.  Again, amazing! Of course he takes other meds because his stroke caused high anxiety in addition to the speech and the abstract thinking deficit.

I doubt this was much help to you but wanted to welcome you and let you know there are many on this board who can relate to what you are going through and are willing to help and support you anyway they can as you continue your MM journey.

Please take care of yourself and ask questions.

Hugs from Ohio,

Lore 

Hi everyone, I just had another question that I wasn't sure if anyone would be able to answer.  I read on one of these sites that playing a woodwind instrument (especially the flute)  by be harmful to Moyamoya patients.  Does anyone know about this?  I am supposed to be taking Class Woodwind next semester and wasn't sure how that would work.  I wonder if it would be OK to play them after the surgery.  If anyone knows anything about this.. please let me know!