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        New Message Board Archives >> 2002 Posts >> Anyone with MoyaMoya?
        
(Message started by: LisaH on Sep 10^th, 2002, 5:33pm)

Title: Anyone with MoyaMoya?
Post by LisaH on Sep 10^th, 2002, 5:33pm

Have you or anybody you know been diagnosed with Moya Moya Disease? I have recently been diagnosed and would like to talk to others with this disease.

It turned out to be not "just a headache"! :-/

Thanks
LisaH

Title: Re: Anyone with MoyaMoya?
Post by Melissa on Sep 10^th, 2002, 5:40pm

Lisa, our webmaster D.J., had dealings with this before. Please check out the link below!

http://www.clusterheadaches.com/wwwboard/messages/97511.html

:)Mel

Title: Re: Anyone with MoyaMoya?
Post by jonny on Sep 10^th, 2002, 5:45pm

Sure!!!, I had that before.....aint it the green drink with the umbrella?

Man, did I have a HA the next day, stay away from that moya stuff.

......................jonny

Title: Re: Anyone with MoyaMoya?
Post by DJ on Sep 11^th, 2002, 12:24am

Yes Lisa!

I was diagnosed with Moya Moya last June. Just sent you an email....

Thank you Melissa for putting your post up (and Jonny for the phone message)! I was at work and just got home.

;)

Title: Re: Anyone with MoyaMoya?
Post by catlind on Sep 11^th, 2002, 11:33am

Anyone who is interested can get some literature from the National Organization for Rare Disorders.

Headache, Cluster is publication #720
and Moyamoya Disease is publication #617

Each publication costs $7.50 if you order it, I'm not sure how much they have online. NORD Literature
PO Box 1968, Danbury CT 06813-1968
Make sure you include the entry # and # of copies you want and send a check or money order and a return SASE if you don't use the NORD form to order it.

NORD's website is http://www.rarediseases.org
NINDS: http://www.ninds.nih.gov/health_and_medical/disorders/moyamoya.htm
Cat

Title: Re: Anyone with MoyaMoya?
Post by DJ on Sep 11^th, 2002, 12:59pm

Yes, you're right catlind. Thank you for the links!

I also encourage anyone with Moya Moya to contact me personally via email....

Being diagnosed with the disease, I've built an EXTENSIVE list of EVERYTHING I found available on the web about Moya Moya. It's probably much more than the NORD can give you!

I'll pass on all of my info FOR FREE to anyone interested.

;)
DJ

Title: Re: Anyone with MoyaMoya?
Post by maria on Sep 11^th, 2002, 11:09pm

MoyaMoya, Mama Mia, is there any relationship between MoyaMoya and clusters, can you have both or DJ are you truely, as they say here, one in a million or 2 million? Maria