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ladybugz

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Love one another

Posts: 101
USA, usa, WA, Washington
Gender: female

Moya moya in association with other diseases
Aug 18^th, 2006 at 2:51pm

I'm curious to know how many people with MM have another disease or disorder associated or not associated with MM. I know that Down Syndrome seems to be a common one and I think there are a few people on the board representing people like that. It's just interesting to know. I don't have any specific disease (that I know of) that are commonly found with MM if anything, but I have other conditions that I wonder if others have.

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jnokes

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Daughter,Paige, has NF1
and Moya Moya

Posts: 43
Smithville, USA, TN, Tennessee
Gender: female

Re: Moya moya in association with other diseases
Reply #1 - Aug 18^th, 2006 at 8:24pm

Hello.I am the mother of a 4 year old little girl who has MM.She also has Neurofibromatosis,a genetic disorder that can cause tumors to grow on nerves.She has a tumor on her optic nerve which had to be treated with chemo and then radiation.Therefore,we are not for sure if the disorder or the radiation caused her to have MM,since both have been linked with the disease.I have also became good friend with another lady that has a 13 year old who also has neurofibromatosis and MM.I wish you all the best.

Jennifer

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Islandentity Experienced Poster Offline My son Robert has MM Posts: 151 Drummond Island, USA, usa, 387, 60, MI, Michigan Gender:	Re: Moya moya in association with other diseases Reply #2 - Aug 19^th, 2006 at 1:44am Hello, I was diagnoised with Klippel-fiel (congenitive fusion on vertabrae) 2 years ago. Whne my son was dx with MM the said that the 2 were associated, Robert had a CT to check for Klippel it came back negative, But now they want to check me for mm Mike
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STrantas

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MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
Gender: female

Re: Moya moya in association with other diseases
Reply #3 - Aug 21^st, 2006 at 8:58am

I have what's called arthrogryposis. It's a muscular-skeletal disorder where, in my case, I can't fully straighten my arms out, for example. If you saw me, you wouldn't know unless I pointed it out to you. My younger brother has it much worse. Anyway, my brother and I used to see a genetisist at Dupont Hospital in Delaware....surprisingly another Dr. Scott - Dr. Charles Scott (Dr. Michael Scott, no relation, did my surgeries). When I was first diagnosed with MM my mom contacted Dr. C. Scott at Dupont to see if they were in any way related. Dr. C. Scott knew about MM, but said that MM and arthrogryposis were not related.

-Shari

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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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itsme Experienced Poster Offline I love YaBB 1G - SP1! Posts: 125 aliso viejo, USA, CA, California	Re: Moya moya in association with other diseases Reply #4 - Aug 27^th, 2006 at 2:47pm Hi...I've been a diabetic since 12 and I know being diabetic STRESS can on set a lot of things. I always wondered if the stress...pushed up my diabetis one notch and TRIGGERED the MOYA. (please excuse my spelling errors). itsme
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fierh New Poster Offline Posts: 20 Lebanon, USA, usa, 435, 173, VA, Virginia Gender:	Re: Moya moya in association with other diseases Reply #5 - Aug 27^th, 2006 at 5:37pm Two years after being diagnosed with mm, I was diagnosed w/ a movement disorder called segmental spinal myoclonus. At first it was very bothersome and noticeable. Not as much now. It's like jerking or tremors.
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pattil647 Junior Poster Offline Mom of Moyamoya Survivor Posts: 70 Langhorne, USA, usa, 484, 119, PA, Pennsylvania Gender:	Re: Moya moya in association with other diseases Reply #6 - Aug 28^th, 2006 at 11:37pm My son has MoyaMoya. He also has a lot of eye problems like strabismus, ambliopia, and excessive far-sightedness. In addition, he has a chromosome abnormality called a Robertsonian Translocation affecting chromosome 21 and 22. I don't know if that helps you -- but there it is anyway.....
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mg12061 Old-Time Poster Offline Posts: 946 Albany, USA, usa, 492, 84, NY, New_York Gender:	Re: Moya moya in association with other diseases Reply #7 - Aug 29^th, 2006 at 3:36pm My daugher was born with Down Syndrome,and was diagnosed with MM at age 5. Mary Grace
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kotipup

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My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: Moya moya in association with other diseases
Reply #8 - Sep 1^st, 2006 at 9:50pm

Hi. My daughter has had a bunch of other problems, in addition to moyamoya. She had her surgeries in February 2005. In June 2006, she was diagnosed with Neurofibromatosis type I. Everything that Daphne has experienced, including moyamoya, has been associated with Neurofibromatosis, although it is very unusual. Like Paige, Daphne also has optic chiasm gliomas, but she had not undergone any radiation prior to her moyamoya diagnosis (in fact, the gliomas were not discovered until just a couple of months ago).

In addition to MM and optic gliomas, Daphne has also had a congenital heart defect (coarctation of the aorta), and a seizure disorder (infantile spasms).

Jenny

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fierh

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Posts: 20
Lebanon, USA, usa, 435, 173, VA, Virginia
Gender: female

Re: Moya moya in association with other diseases
Reply #9 - Sep 6^th, 2006 at 5:18pm

This isn't a disease per se, but does anyone suffer from ADD along with their MM? I have adult ADD, but am having trouble finding any meds that work for me. I can't take any of the stimulants because of the MM. My regular dr just prescribed a new med for me today. I can't remember the name of it, but I hope it works!

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