Apr 18, 2013

My day at the pain “center” went great!  Super long, though, and now I’m dealing with nystagmus again cuz I had to wake up early…but overall, the evaluations were really thorough, and they were able to give second opinions and recommendations.  The dr., physical therapist, and even pain psychologist were all real down to earth! 🙂

Dr. S, the physical therapist, and me 🙂

The dr. wants me to go to a 3 week inpatient pain rehab program because I need to get better function-wise and outpatient physical therapy isn’t enough.  But…the program is in Cleveland, Ohio!!!!! :  So we’re gonna research things more and possibly look into different ones, although the only other high-reputation programs are in Chicago, Florida, John Hopkins, or at the Mayo Clinic in Minnesota.  Of course, going to something like this won’t be for a while anyways as I need to get a little better first.

I got 5 tubes of blood drawn this afternoon!  The genetic results (which will look at my mitochondria DNA genome sequence for defects, etc.) can take up to 8 weeks to come back..  So more waiting to do.. :  I also drew blood to check my lactic acid—the test results came back positive which is another sign of Mitochondrial Disease.  On Friday, I’ll be seeing my Genetics dr. again to discuss the plan the doctors formed. 🙂

In the meantime, we are planning on going to the Cincinnati Zoo tomorrow since that will be the only day with no appointments!  Yay! 🙂  So excited!

Post written byKerissa

This post has 2 comments

  • I am so sorry that you are in pain. Wow, 5 tubes of blood, that is a lot. Did you ever have to get any autonomic nervous system testing done? My daughter has to get it done and I am very nervous about it. Just trying to get another person's point of view. Thanks for sharing and I hope you feel better soon. Have fun at the zoo!!

  • Hi Lauren,

    Yes, I did have autonomic nervous system testing done at the end of May. 🙂 Thankfully, it wasn't that bad at all! One part of the test did involve some stinging of the skin, but other than that, it was painless. It was very fascinating!

    Let me know if you have any other questions!


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