EMG & Ataxia clinic 4/8

Tuesday was a real rough day. It has taken me this long to get myself together enough to write this. Connor got his EMG @ 9. That was hard on him and hard on us to watch him go through it. That test came out negative. We went straight to the ataxia clinic just like I was told to do. No one ever called me back when I tried straightening out the 3:15 appointment. I decided that I was going to go ahead just like I never knew about the 3:15 time. Let them try to blow me off to my face. Joe was a little concerned that I was going to end up arrested if they tried making us wait for our appointment but I was determined that they were going to see him and he was not going to wait 6 hrs or so between appointments.

We got to the ataxia clinic around 10 and around 10:30 we were called up and told that the dr was going to try to get there before 12 so why don't we go get something to eat. That was fine with us. We were hungry and thirsty by that time. We got back just before 12 and we were seen by 12:15. I really like this dr. There was just something about him that made me feel like we were going to get somewhere with him. He thinks he knows what Connor has. He isn't sure but he thinks he has something called a Mitochondrial disease. There are 40 different kinds and we aren't sure what kind he has if this is it. There is no cure and no good treatment for this. The progression of this disease is anywhere from mild to fatal depending on which of the 40 he would have. There is a test for this but it has alot of false negatives. Even if he has this disease the test only picks it up about 30% of the time. It takes up to 5 weeks to get the results back.

We went and had the blood test done as soon as we were done at the clinic and all we can do now is wait. If this test comes back negative then the next step is a muscle biopsy. I am waiting to hear from this dr about a clotting disorder that could run in our family to see if he thinks it could have anything to do with what is going on with Connor and if we need to pursue it. He doesn't think so off the top of his head but like he said outside of the mitochondrial diseases this is the only other clue he has.

At this point we don't even know what to think or what to hope for. The dr really did floor us with this news. He seems to really think that this is what is going on with him though. After looking it up myself I have to say that it does seem to answer most of the problems that Connor has had that all the other ideas didn't. It seems the most plausible than any of the other things he has been tested for. Please keep him in your prayers. He really needs them.