Appointment updates!

Kerissa • January 18, 2014

This past Monday, I had a long day of speech and physical therapy back to back.  My speech language pathologist and her colleagues notice that I speak with my throat muscles instead of with my diaphragm.  Because of my muscle weakness, I’m not able to use my diaphragm 100%, so I’m compensating by speaking with my throat muscles.  Yes, it turns out that IS possible as weird as it sounds. lol

But, we’re supposed to only use our throat muscles for swallowing purposes…  So because I’m using those muscles to speak AND swallow, I’m fatiguing them.  And THAT is why I experience choking.  Soo, Speech (together with physical therapy) is going to try and strengthen my diaphragm muscle…

That whole day of therapy, though, did me in.  Later that night, I could hardly move my diaphragm because it was so fatigued!  I couldn’t breathe well at all.  It was scary, and I almost wanted to go to the ER again.  That’s why Congenital Myasthenic Syndrome (which the doctors are thinking I also have) is often fatal in babies because they stop breathing.

Thankfully, I had my CPAP (continuous positive airway pressure) machine, and that helped somewhat.  But it’s going to be a hard challenge to find a balance and not overdo things in future therapy sessions.

On Tuesday, I had a follow-up with my physical medicine dr.  Back in December, Orthopaedics at Cincinnati Children’s had me get my first scoliosis x-rays (specialized x-rays of the whole spine from top to bottom).  It turns out I do have some scoliosis.  My spine is curving to the right.  Dr. C wasn’t expecting this (including me!).  This curvature is probably why I’ve been dealing with chronic spine pain..  Dr. C isn’t sure if this started when I was a baby or if this is a new problem, so he wants to monitor this.  I’m to get the same x-rays done this December to check up on it.

Dr. C is referring me to the Neuromuscular Program at OHSU, and he also put in an order for me to have a walker.  I’m as surprised as you are!  But the walker will just be for home to help me with my abnormal gait and so that I can move around a little more easily in our home.  I hope I can pick my own color like I did for my wheelchair.

Next month, I have an appointment with Dr. C’s brace clinic.  Not sure what to expect with that, but maybe I’ll be able to get rid of the crutches!

New Struggles

By Kerissa Lee • April 30, 2025
"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." -John 16:33- 

More difficult news..

By Kerissa Lee • April 9, 2025
Dear friends, I’d really appreciate your continued prayers. 🥺 Thank you for being on this journey with me through the good and bad. ❤️ Last year, I had a sleep study where I shared that I was diagnosed with moderate Central Sleep-Disordered Breathing (central apnea happens when the brain doesn’t tell your body to initiate breaths). It was noted that I stopped breathing about 17 times per hour. Well, my neurologist wanted me to get yet another sleep study last month to make sure this neck weakness hasn’t caused worsening apnea. And I’m sad to share that the results were much worse than last year’s. :( I thought last year was bad, but this latest study shows that I stopped breathing more than 40 times per hour (almost 400 times total through the whole night). 🥺 This was hard to hear and also such a reminder that God is the one who gives us “the breath of life” (Genesis 2:7) every minute. It’s by his mercy that we wake up to each new day. ☀️ What makes my case complex is that my esophageal sphincter has been affected by the mitochondrial disorder—it’s weak, so when air from a sleep machine is pushed down into my lungs, bad throat gurgling happens which keeps me up at night because my esophageal sphincter can’t close all the way like it should. :( My appointment with the rheumatologist was yesterday, and I wish I could say she gave a concrete diagnosis of what’s been happening these last several months…but that wasn’t the case. 🥺 I have to get more specific labs done. She also ordered x-rays of my hands and feet to check for possible spots of rheumatoid arthritis or calcinosis. The doctor said sometimes a new condition happens gradually, and it’s a wait-and-see type of situation. 😥 If these additional tests and labs still don’t give a clear cut answer, I’m so glad I have a second opinion with another rheumatologist at the end of June. This one sounds especially good because he’s a DO (doctor of osteopathic medicine) and offers a whole-body approach regarding treatment. Could you please pray something can be done soon as my quality of life continues to be rough, and these latest symptoms have been going on for half a year now. :’( Hard to believe October was 6 months ago! All this time, I’ve just been waiting.. I did ask my PCP at one of my appointments if he ever orders treatment for something even without a definite diagnosis, and he said “yes” which was encouraging to hear. His family leave is almost over, so I see him again soon. Just finished a virtual follow-up with another one of my amazing doctors this afternoon. 💜 She knows a very specialized neurologist in Washington who has his own private practice. She wants me to see him and hopes he’ll be able to connect all the dots and see the bigger picture. So blessed by all of my many doctors who try their best to help me! 🥲 I started the process in applying to the Undiagnosed Diseases program through Harvard (it got pretty delayed because of my 2 mitochondrial crashes in November and December). My application has been assigned to the Seattle clinical site. Please pray that the doctors who review my case will be able to accept me as a patient and find the genetic defect causing my mitochondrial depletion. The UDN acceptance rate is about 40%.. I saw this quote recently by Martin Luther and just had to hand letter it (so thankful for one of my neurologists who increased the anti-seizure medication which has been helping to decrease my hand tremors). ❤️ This statement by Martin Luther is such a beautiful reminder. All that’s happened lately has been the hardest trial, but I’m praying that I will persevere and bear this cross daily to bring honor to the Lord. I know my life is in his loving hands. I’m thankful for God’s promises in Romans 8:28–“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” ✨

February update ❤️

By Kerissa Lee • February 27, 2025
Hi, friends, I went to see my neuromuscular neurologist in Seattle last month, and since there are no neuromuscular specialists here in Oregon willing to see me, he kindly placed a referral for me to see a neurologist he trained who practices in Vancouver, WA! That appointment was originally scheduled for late April, but this new doctor moved it way up, and I was able to see him at the end of January! 😊 I’m so grateful for him, and he seems knowledgeable about mito. He told us that I “am easily the most complex patient he has ever seen.” 😥 I had to get a very painful test completed called an EMG (electromygraphy). It involves having big needles (larger/thicker than acupuncture needles) placed and pushed repeatedly into my neck and shoulder muscles. 😢 Hurt so bad!! I’ve had this done more than once on both legs, but it was much more painful on the neck! He wanted this test to check for active myositis since my MRI was inconclusive. Well, the results show that this progressive neck weakness is due to mitochondrial disease progression, and not from myositis. Whenever I have a “mito crash,” I’m usually able to slowly bounce back afterwards with time. But since I’m not recovering, he explained there’s degeneration going on and that my mitochondria are dying. That was hard to hear. 😢 We may have an idea why my condition is worsening quickly.. I received results from an extensive autoimmune panel which shows that 2 labs came back abnormal for a potential lupus diagnosis. We’re not positive I have it as I need more tests done, but my neurologist said that could definitely be what’s causing this mito progression. I have to see rheumatology now, but unfortunately, OHSU denied to see me. In my previous post, I mentioned that my pain doctor referred me to palliative care. Well, they, too, turned me down…. It’s just hard to fathom that multiple specialties at THE top hospital in Oregon won’t see me because I’m too complex…it’s so isolating and lonely. 🥺 Since my PCP has a new baby girl and is out on leave for 2 months again, I’m so grateful for my GI specialist’s help—it was kind of him to place a referral for me to see a rheumatologist at Providence. That appointment is in April. Please pray my whole medical team will be able to find out the cause of why I have harmful antibodies in my blood. It has now been 4 1/2 months since this all started. Time seems to crawl, yet at the same time, pass by quickly. My mitochondrial symptoms continue to worsen. For example, if I have a virtual visit with one of my doctors, just lying in my recliner and talking to them for 20 minutes causes horrible nystagmus afterwords. 😭 If it’s true there’s something autoimmune going on like lupus, it’s using up all the limited energy I have.. 😔 Could you also pray that the mitochondrial disease progression will slow down? I wanted to share an answer to prayer—you may recall I posted last month that my Seattle neurologist sent a new referral for me to see my mitochondrial specialist in San Diego as it’s been 4 years since I last saw him. Well, even though he’s semi-retired, I’m so happy to say that he accepted me which is a blessing from God! Isn’t that so wonderful? 🥹 He’s booked out ‘til September! But I’m not physically well enough to see him now anyways, so we’re praying my health will show some improvement 7+ months from now and I can travel then.. The Lord recently led me to The Tapestry poem written by Corrie Ten Boom. If you aren’t familiar with her, she was a faithful Christian during World War 2 who survived Auschwitz and the holocaust! You may have read this poem before, but knowing her testimony and how she had to go through extremely hard trials makes The Tapestry even more meaningful/impactful. ❤️ She is an example to me, and I hope this is an encouragement to you as well: “My life is but a weaving Between my God and me. I cannot choose the colors He weaveth steadily. Oft’ times He weaveth sorrow; And I in foolish pride Forget He sees the upper And I the underside. Not ‘til the loom is silent And the shuttles cease to fly Will God unroll the canvas And reveal the reason why. The dark threads are as needful In the weaver’s skillful hand As the threads of gold and silver In the pattern He has planned. He knows, He loves, He cares; Nothing this truth can dim. He gives the very best to those Who leave the choice to Him.” -Corrie Ten Boom