Yesterday, I saw my physical medicine dr. for a 4-week follow-up on my spine pain. Sadly, physical therapy hasn’t been helping, and Dr. C thinks this chronic spine pain is related to my muscle weakness (from the underlying neuromuscular/mitochondrial issue). So he referred me to the Spine Center at Cincinnati Children’s for a second opinion when I’m there in December.
Lately, I’ve also been having issues with swallowing/choking (in addition to weak chewing muscles), so Dr. C put in an order for speech language pathology here and possibly a swallow study. He wants to speak with my geneticist in Ohio about this new problem in case I need to see Speech there, too.
Regarding my GI system, I’ve lost 4 pounds in two weeks.. If this keeps continuing, I’m going to hit 78 lbs. very soon! I did get referred to GI at CCHMC, and the team is currently reviewing my records/referral.
Yesterday, I had a horribly long episode of nystagmus, and it made me want to pop my eyeballs out to stop them from oscillating uncontrollably. 🙁 I really hope Neurology at CCHMC will be able to help this issue..
To make matters worse, I’ve been having cognitive problems—I often have trouble recalling what verb tense to use when I’m emailing or texting my friends, and I’m forgetting certain details. 🙁 This is related to the CHAT gene mutation that was found in the mito-exome.
As you can see, I’m not doing that well. But I am reminded that I can do all things through Christ who strengthens me! 🙂 Thank you, Lord, that I have You to lean on!
I’ve been super busy getting all these appointments lined up in Ohio! It now looks like we’ll be there for about 2 weeks (and longer if necessary). My parents and I leave for Ohio in only 3 1/2ish weeks..!
Many blessings on your week,
under Your wings I will abide,
and every enemy shall flee;
You are my hope and victory.”