marialou's MedHelp Blogs https://www.medhelp.org/user_journals/show/395787 Medical communities and forums staffed by doctors from leading medical centers. Over 325 forums and communities providing medical information and medical help. en its been a journey basically my journey has been tryin to get over losin my daughter at four yrs old.which at a young 22 marialou Mon, 28 Feb 2011 22:45:05 -0500 https://www.medhelp.org/user_journals/show/272173/its-been-a-journey https://www.medhelp.org/user_journals/show/272173/its-been-a-journey a rare syndrome if i put goldberg blah blah no one knows,its been with me for such a long time and ye know wat?not me marialou Wed, 24 Nov 2010 20:45:19 -0500 https://www.medhelp.org/user_journals/show/248287/a-rare-syndrome https://www.medhelp.org/user_journals/show/248287/a-rare-syndrome thankful for the support i would just like to say,when i first became a memeber on this site,i didnt understand the concept of marialou Sat, 05 Sep 2009 21:52:08 -0400 https://www.medhelp.org/user_journals/show/119220/thankful-for-the-support https://www.medhelp.org/user_journals/show/119220/thankful-for-the-support one in a 6 billion my daughter has this rare goldberg and shprintzen syndrome and now i have been informed that there is marialou Fri, 22 May 2009 21:03:04 -0400 https://www.medhelp.org/user_journals/show/91416/one-in-a-6-billion- https://www.medhelp.org/user_journals/show/91416/one-in-a-6-billion- goldberg and shprintzen syndrome syringomyelia and centronuclear myopathy and ophthamoplegia My daughter is 14 this august and in the past year and a half she has been diagnosed with a syringomy marialou Sun, 22 Jun 2008 14:38:47 -0400 https://www.medhelp.org/user_journals/show/14409/goldberg-and-shprintzen-syndrome-syringomyelia-and-centronuclear-myopathy-and-ophthamoplegia https://www.medhelp.org/user_journals/show/14409/goldberg-and-shprintzen-syndrome-syringomyelia-and-centronuclear-myopathy-and-ophthamoplegia centronuclear myopathy goldberg and sphrintzen syndrome goldberg and sphrintzen syndrome is an exceptionally rare syndrome and i have over the years found it marialou Tue, 22 Jan 2008 10:10:08 -0500 https://www.medhelp.org/user_journals/show/3012/centronuclear-myopathy-goldberg-and-sphrintzen-syndrome https://www.medhelp.org/user_journals/show/3012/centronuclear-myopathy-goldberg-and-sphrintzen-syndrome