Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Hi, my name is Krista I have a son who is five and we were told in 2000 that he has CP and has abnormal white matter and two years ago we found out that it is progressive and most of the damage was in the cerebellum. That's when his nero told us that she thought it was Mito. We did a muscle byopsy that summer in Grand Rapids MI(june of 2002)and it took a year to get everything back. It told us nothing. (it was frozen) The doc's then said that they were going to send everything to Dr. Shoffner. We saw Dr.Shoffner in December and did another muscle byopsy he told us that it would take 8 to 12 weeks for the results from his muscle byopsy to come back. I'm sure you all have felt the same way but it will be 13 weeks on the 17th of April and I am checking the mail hoping to get something or when the phone rings I hope that it might be his office wanting to make an appt to come back and talk with him about the results. My question to any body who wants to respond is, how long did you wait and how were you contacted by Dr. Shoffner? Was it by phone, mail, or through your local nero. Should I be calling by now to see how things are progressing or should I wate? I really hope that it doesn't take another year to get stuff back from the labs. He also wanted to look into a couple of other degenerative disease. Is there anyone that can help me with this? Thanks so much. Krista Mother of Skyler (5) not yet diagnosed Quote Link to comment Share on other sites More sharing options...
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