I'm just wondering if anyone else has this condition along with other diagnoses.  My daughter has congenital muscular dystrophy, with restrictive lung disease secondary to the muscle weakness. She uses bi-pap at night for sleep apnea. We discovered the moyamoya when she was admitted with a deep vein thrombosis (blood clot) in May 2005, and MRI revealed she had suffered some minor strokes in the basal ganglia. She also has congenital total hearing loss in her right ear - coincidentally the right cerebral artery was almost completely blocked when she was diagnosed with the moyamoya. She underwent EDAS in August 2005, and has been fine - did great in two AP classes this year as a 10th grader, and is now studying Japanese at the local college over the summer, so the brain seems to be working fine...

Hiya! I have been diagnosed with heart disease, and have had stents inserted in four coronary arteries. My brother, who also has Moya Moya, has polymiocytis and a spastic coronary artery.

Hi,

Annamarie has Down Syndrome and Hypothyroidism along with her moyamoya.  She doesn't seem to have any other vascular problems that we know of.

Margaret

My daughter was diagnosed with Moyamoya, 12/24/05, she had several TIA's prior to her diagnosis, and suffered a major stroke a week after her diagnosis. She had her EDAMS surgeries in 2006.  She has Livedo Reticularis (which is associated with Deep Vein Thrombosis). She was diagnosed with Hepatocellular Carcinoma (Liver Cancer) on 12/24/07, after she had surgery to remove a tumor from her liver.  We were told, 4/8/08, that her Cancer had returned, and she had  new tumors were found.  She is now on a cancer drug called Sorafenib, and her most recent CT scan showed most of her tumors had shrunk by 50 percent or disappeared. She was just diagnosed with Hypothyroidism (they believe it might be a side effect of the Sorafenib, and is probably negligible. She is seeing an Endocrinologist this week.  She just finished 10th grade and did great in her honors classes. She gets one on one instruction in math (Geometry), because her cognitive functioning was most affected by her stroke. She goes to daily Tennis lessons, and is doing very well. Prior to her diagnosis, which took over a year, she enjoyed excellent health and was identified as being intellectually superior. Kris has dealt with all of this with, grace and wisdom far beyond her years, and is an inspiration to everyone she meets.

Hello,
My daughter had her surgery when she was 4 years old. She is now six and was diagnosed last year with a berry anueyrsm and a couple of months ago with Epilepsy. She is now on Tripletptel to control seizures and aspirin daily. Her neurosurgeon told me she will definetely need more surgery once the anuerysm starts to grow larger.

Hello, I have Mitral valve prolapse  and i was also diagnosed with Sjogrens, the same time i was with moyamoya, and I also have Neurofibromatosis . I often wonder what else is next, lol, and supposedly  the Neurofibromatosis and moyamoya, are apart of each other, or something, i dunno, i tend to not read up on alot of it, because it scares me, so I am fine not knowing :). But I am loving life, and just ecstatic to be alive, some people ask me how can I be so up beat about everything, and I say, well its my fate, I can not change it, and I was chosen because I can do it, :)

My daughter has Hypothyroidism and Down syndrome.she wa diagnosed with moyamoya at 5 yrs odl she's now 11.
Mary Grace

Emily is 13 and was diagnosed w/NF 1  (Neurofibromatosis) at age 6 months.  She has some cognitive problems in school.  She learns much better verbally than by reading.  Her intelligence levels are normal.  They think there may be a correlation between the NF and the MMD.