THIS IS MY STORY . . .

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Jun 4, 2013

On Friday, I had my autonomic nervous system testing done.  What an interesting experience!  I’m constantly amazed at all these types of machines and their different purposes.  I should get results this week!

This part of the test checked how well my sensory system is working.  I held this little remote and pushed the “yes” or “no” button when I could or couldn’t feel the vibrations/cold temperatures.

This test is called the Quantitative Sudomotor Axon Reflex test.  It’s used to assess my small nerve fibers which are linked to the sweat glands.

The tech injected this neurotransmitter called Acetylcholine into these “capsules” against my skin.  She also stuck all these electrodes on the left side of my body.  The stimulation sure stung!

Here are all the graphs she had to record!

This is the tilt-table test.  It’s done to look at how my blood pressure and heart responds to the change of position.
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I got referred to Doernbecher’s Metabolic program, and hopefully I can schedule an appointment this week!  The doctors there specialize in metabolic disorders, and they can help diagnose/evaluate patients with mitochondrial diseases.
I had my second occupational therapy appt. today.  My therapist is so sweet!  Her name is Amy. 🙂  She’s been teaching me how to “pace” and conserve energy.  This Wednesday, after my grandma’s memorial service, I have my appt. at the OHSU seating clinic to get measured for my wheelchair. 🙂  A physical therapist named Cinda (who specializes in neuro/muscular disorders) will be helping the wheelchair rep. evaluate and give input on everything.  After that, Amy’s going to talk with her and hopefully form a better therapy plan for me.
I’m still waiting for the mtDNA sequencing to be completed.  Hopefully soon!
Post written byKerissa

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