Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 My daughters have their first appointment tomorrow with our Pediatric Neuro-muscular Specialist since being diagnosed. We've been seeing this same doctor since the girls were 18 months so I'm not nervous about meeting her, more about some of the information that will be relayed. They are also going to test her twin sister (when we were looking for a diagnosis, we tested one girl at a time since they are idential and have the same DNA). They've also requested to test my husband and I. My husband isn't too fond of the idea, but I'm trying to explain to him the importance of helping other families out and that we are helping in the research of WHY people develope or are born with CMT. When the doctor first told me the diagnosis, I was floored since no one on either side of our families have any type of neurologicial disorders or show any symptoms. I'm hoping by testing my husband and myself, it will maybe provide some answers into why. I'd really like to know, although I may never have a reason, why they are only 3 1/2 and are showing full fledged signs and symptoms of CMT2d (GARS) when they say they've never diagnosed anyone this young with it. I guess I just wanted to let everyone know what was going on. Now we'll have to wait the 2 months to get the results back from Athena Diagnostics. :-( Mother to Ashlee Rayne & Aimee Renae Quote Link to comment Share on other sites More sharing options...
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