Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 I am also waiting for Schoffner's 12 week time line...He actually said 8-12 weeks. I go 12 to be on the safe side. I asked him in the " intake " ... What are the chances of this being a waste of time? He told me... " There is a chance that we will come back with nothing... or non-specific Mito... or Mito... or even something totally different from a totally different " basket " Something that NO ONE even thought of. I believe he was clear on the risks... and I knew the chances before I made the decision. I'm not wanting to come through all this with nothing.... but I am aware that it could happen. He did say that if he thought for a second... that the Muscle Biopsy could not give us the answers... he would not do it at all. I also know... that right now.. I have nothing... no diagnosis...NO ONE will touch my child as far as " treatment " due to the lack of knowledge and the non diagnosis state that she is in. They don't want to do Therapies for fear of hurting her or for fear that it won't do any good anyway. They are currently only treating the " problems " that arrise and there is NO Long term goal. I am in this Muscle Biopsy for a possibility of a " name " and possible treatments to help my child. Do you know what My 6 year old asked, Schoffner? He just about cried in the consult when asked... How are you going to help me? and Goodness knows... he couldn't give her a concrete answer because he wasn't even sure he could help her until he gets these answers and then there is a limit to what can be done. ANYWAY, I am getting off my soap box now... I hope this helps Anne. Dorothy Lincoln Quote Link to comment Share on other sites More sharing options...
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