So after having to reschedule Kendall's neuro appt from January we finally got in. We saw a different neuro than Cody saw. He was nice enough and very patient. He said right now she's not showing any signs physically, which is totally possible, but with that being said he can't justify the expense of genetic testing to confirm or deny whether or not she has it. So he said he would set us up with Shriners and hopefully they will be able to help. So basically we've made no progress. :(( the not knowing kills me. The range in physical symptoms is huge! It can go from very minimal to greatly debilitating. We may have to wait a few years so she can undergo the emg testing :(( I just hope eventually we are able to know for sure one way or the other.
Sorry for the rambling but you ladies are the only ones who get it.
on Mar. 29, 2014 at 8:26 AM