Guest guest Posted September 10, 1999 Report Share Posted September 10, 1999 I received some preliminary information about what might be in Dr. Dobyns report through my geneticist. She's been in touch with him. He told her that may have Polygyria rather than Polymicrogyria. She has way too many gyri, but the sulci between them seem too deep and well developed for typical PMG. My geneticist is going to have the radiologist review the MRI again with this new development in mind and seek some outside consultation. So the search goes on . . . Part of me wants to let go of the need for a firm diagnosis because it makes me a bit crazy. The diagnosis changes, the prognosis is uncertain, and there are very few children to compare her to. It all leads to a big question mark ?????????? On the other hand, I don't want to miss any important information useful in treating her or in any way understanding what is going on with her. I'm feeling very frustrated. Can we skip ahead 5 years please? This venting reminds me. We did decide that this forum would be for parents and family member only, right? I can see now why it would be nice to keep this private. I didn't really think Dr. Dobyns would have the time to read all of our chat anyway. He's supposed to be reading MRIs, writing those reports and making genetic history. Maybe we could open a Onelist loop for the Dobyns team to communicate with all of us. A place where we could ask questions of him and he could respond to the group and he could get information from us too for his research. What do you think, ? Good night all! ( - born 7/14/98 w/PMG) Northern California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 1999 Report Share Posted September 10, 1999 - boy can I relate. You know I'm on the specific diagnosis merry-go-round along with you... It really SUCKS !!!!! I have a feeling that when it comes to Neuronal Migration Disorders, anything goes.....For all I know, Crys might have bilateral polygyria also. I figure it can't be polymicogyria without it being more evident....All we can do is support each other & wait & see what the real deal is. I would LOVE for Dr.Dobyns & any other Neuronal Migration Specialists to have a forum to communicate with us.... Scientist Bill is VERY nice, but he's working with mice, not people !!! It would be great to have a place to post questions & get answers right away ( we can dream, can't we !! ) . I'm also playing the waiting game, which I HATE !!!! Gotta go. Give the girls a big hug from me & mine... Your pals in N.J., & Crys Quote Link to comment Share on other sites More sharing options...
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