Symptoms and Setbacks

Kerissa • March 23, 2014

Hello friends,

I’m sorry it’s been almost two weeks again since I last blogged.  I always have bad news to share. lol  The disease process (whether it’s mito or something else) is progressing, and I’m dealing with way too many symptoms.  I look so normal, and yet I deal with all of this continually:

-Migraines
-Complex Regional Pain Syndrome
-Nystagmus
-Ptosis
-External Ophthalmoplegia
-Tinnitus
-Myoclonus
-Sleep-disordered breathing/sleep apnea
-Hypersomnia
-Muscle weakness/wasting
-Hypotonia
-Fatigue
-Premature Atrial Contractions
-Postural Orthostatic Tachycardia Syndrome
-Slight Tricuspid Valve Regurgitation
-G.I. dysmotility
-Dysphagia
-Hypermobility
-Cervical spine instability
-Mild scoliosis
-Dysautonomia
-Tremor
-Vertigo
-Muscle spasms/cramping in right hand

THIS is the nature of mitochondrial disease.

I mentioned in my last post that I’ve been having breathing problems at night, so my sleep dr. did increase the CPAP pressure this past week.  It’s really strong, but it does help.

I’ve also been having some setbacks in physical therapy and occupational therapy.  My brain isn’t recognizing where my left foot is, and I’m having sensory/proprioception problems.  The dizziness came back again, too.  But my physical therapist is awesome, and I know he’ll do all that he can to try to help these issues.

My occupational hand therapist is wondering if the muscle spasms/cramping in my right hand is from dystonia , so he’s having his colleague take a look.

In addition to all of this, I’m experiencing bad stomach pain after eating.  And it doesn’t change with the type of food (gluten-free or not).  I really hope this isn’t delayed gastric emptying..  Last year, I had that gastric emptying scan which came back normal, but I didn’t have this symptom then..  If it’s not better within the next week or so, I’ll have to tell my GI specialist.

I’m just getting worse as each week passes, but the Lord has been so faithful.  I couldn’t do this without Him.  I know I shared this before, but one of my favorite Scripture passages from the book of Isaiah says this, “Fear not, for I have redeemed you; I have called you by name, you are mine.  When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you” (Isaiah 43:1b-2).  That’s what the Lord has been to me.  Always there.  And with His help, I know I can take on these challenges!

I will end with something that encouraged me!  Last week, a rep from Courtagen Life Sciences (where I got my DNA testing) emailed me and said he found my blog on the web!  He wanted to share it on Courtagen’s facebook page which has over 26,000 followers!  I thought that was so cool and neat!  I took a screenshot of it.

October prayer request

By Kerissa Lee • October 19, 2025
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. 🙁 It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. 😢 Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. ❤️

Thank you! (+ a prayer request)

By Kerissa Lee • October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3

Praises & Prayer Requests

By Kerissa Lee • September 3, 2025
"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23