Posted by Lisa on March 27, 2003 at 21:31:27:
In Reply to: my neice, my son posted by missy on March 27, 2003 at 17:48:14:
Hello Missy,
I'm sorry to hear of your family's recent troubles but you have found a greatly informative and friendly place.
Moya Moya is "thought" to be hereditary but from what my doctors have said and from what I have read, this has not been proven absolute. They are not 100 percent sure on the hereditary factor. I have met some MM people that it has run in the family and others where there are no other cases- myself included. More research really needs to be done!
Regarding your son, what tests has he had? An MRA first diagnosed my MM and then a angiogram confirmed the diagnosis. I, personally, did not have any seizures but I am 35 so things may be different for different ages not to mention that everyone seems to have slightly different symptoms. I do have TIAs though. Regarding your neice, what do you mean when you say "it is not looking good for her"? Has your neice suffered a stroke? Either way, with surgery, MM is not a death sentence by any means.
Finally, where are all of you from and what hospitals are the doctors your son and neice seeing affliated with? I know first-hand how important the choice of doctors to handle the MM is.
I know it's scary initially- really I KNOW! But read as much as you can about MM, ask a lot of questions and soon you will find that, in most cases, it is a managable and successfully treated disease.
I hope to hear more from you soon. There is a lot of support here so please ask anything, share your feelings or rant and rave! I will be thinking of you, your son and your neice.
Lisa