“Scars and struggles on the way, but with joy our hearts can say…”

Kerissa • May 09, 2013

Lots of updates right here!🙂

I saw my neurologist today, and she is referring me to Seattle Children’s mitochondrial medicine and metabolism program.  Here’s a funny fact: the only mitochondrial programs in the Northwest are in Washington and California but not Oregon…!  Not sure when that evaluation/consultation will be yet, but she is faxing the referral today and labeling it as “urgent”!

I’m also going to be undergoing autonomic nervous system testing at OHSU.  In addition, she mentioned me having a sleep study done because I’m so fatigued and also dealing with increased muscle jerking.  But she decided not to do this right now since I have a lot on my plate.

My mtDNA deletion/duplication analysis came back normal (but only 5-20% of mito patients have a del/dup anyways), so now the doctors are going to be doing something called whole mtDNA genome sequencing.  The results can be normal also.  If so, the next step is a muscle biopsy.  As you can tell, diagnosing a mitochondrial disorder is really challenging and takes many steps.

Right now, I’m currently stopping physical therapy.  My PT suggested I see this occupational therapist at OHSU who specializes in neurology and fatigue.  So my neurologist referred me to see her.🙂  I’m sure I’ll learn a lot through her!

On Monday, I have to get a kidney/bladder ultrasound!  I sure feel like a human “guinea pig”!

Anddddd…that’s all for now!😉

“…Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace

Never once, no, we never walk alone…
 Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful!”
~”Never Once” by Matt Redman
By Kerissa Lee 23 Jan, 2024
Hi, friends, I had a whole other post ready to go with some good news, but instead, I have an urgent prayer request. I started experiencing sudden onset numbness, tingling, and weakness in my whole left leg, and it’s been so scary. 🥺 It just came on out of the blue. I was doing so well with physical therapy each week (able to walk fast on the treadmill and leg press 40 lbs), and now, I have to limp because my left leg is soo weak. I really want to avoid the ED as much as possible, so I saw one of my doctors today. She’s concerned I’m having a big motor nerve issue. 😭 The plan is to see a physical medicine specialist, have a nerve conduction study, get an urgent MRI done, as well as see my PCP and pain doctor on the 25th and 29th for further evaluation/testing. I know I already said this, but it really has been so scary to lose function so quickly. Can you pray that I will trust the Lord and not worry? It’s been very hard, so I’d really appreciate your prayers and support in the coming weeks. Thank you so much. ❤️
By Kerissa Lee 01 Jan, 2024
"Let us know; let us press on to know the LORD; his going out is sure as the dawn; he will come to us as the showers, as the spring rains that water the earth." Hosea 6:3
By Kerissa Lee 11 Dec, 2023
"This hard place in which you, perhaps, find yourself, is the very place in which God is giving you opportunity to look only to Him."  Elisabeth Elliot
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