Mar 13, 2014
I’m sorry it’s been a while since I last updated!  I just want to thank you all for your continual prayers!  It’s been a tough couple of weeks.  At the end of February, I was dealing with blurred vision for several days, so my neuro-ophthalmologist squeezed me in for a follow-up.  She thinks I was experiencing an ocular migraine.  It’s either that or mito-related.
Last Monday, I had an MRA done of my neck.  The test was pretty much finished, and one of the techs even took out my IV.  But one of the other techs came back and said they needed to do some brain sequences.  I was a little puzzled why (since I just had a brain MRI the beginning of February).  But I got that done and then went home.  When I woke up the next day, my mom said that the MRI place called again and they wanted me to come back that day for more brain images!
Well, I received the results on Friday, and they’re somewhat abnormal:
This is me in vascular form. 😉  That blue arrow I drew is pointing to my left vertebral artery—see how it’s kind of coiled and looped?  That’s called tortuosity which is a new med term that I learned. 😉  People with tortuosity are prone to aneurysms/strokes, and my neurologist said it can be seen in patients with Ehlers-Danlos Syndrome.  My cervical spine instability is putting stress on my arteries….so my neurologist wasn’t very surprised by this new finding.  She said it’s just something to keep an eye on.

I’ve also been dealing with decreased appetite and weight loss again. 🙁  I’ve been doing all that my GI dr. told me to do, but it’s not helping.  So he referred me to their clinic’s nutrition therapist, and that appointment’s next month.  We’ll see if she has any other insight to offer..

After PT and OT today, my mom and I were able to ride the tram up to the OHSU hospital again because I had to drop off my CPAP sd card at the sleep clinic front desk (my sleep dr. wants to take a look at the data to see if he needs to increase the CPAP pressure because I’ve been experiencing breathing problems due to tired respiratory muscles).  OHSU gives free passes to patients! 😉  The ride was especially fun today because the weather was sunny and beautiful!

For those who don’t live in Portland, this is what it looks like!  Took this while riding the tram. 🙂

That’s about all for now!  Haven’t heard more about the plan from the mito specialist in San Diego…the coordinator is waiting for tests like the muscle biopsy to get pre-authorized.  And you know how long insurance matters take.. 😛
Post written byKerissa

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