Hospitalized -- Again

I'm back at the hospital.  I'm writing this from the hospital, and I'm not feeling great, so I expect this to be a far more stilted post than normal.

What Happened Before The Muscle Breakdown?

We decided to move to Vancouver.  I was in Vancouver for work and to look for a house to rent.  I did not intend to come back until I found a place, so I flew out on a one-way ticket and booked a hotel through January 31.

When I left, my daughter had been on antibiotics for strep throat for 24 hours.  Because I was going to another country, I asked my doctor for antibiotics in case I started showing symptoms.

On January 30, I started to feel prodromal.  I ate lunch (my last solid food for a few days) and immediate felt nausea.  As an (unfortunately) experienced CPT2 patient, I knew how dangerous this was.  Difficulty eating plus illness are a bad combination.  I started to have sugary drinks to make sure my body had all of the carbs it needed.  I had all of the things I normally avoid -- non-diet Coke, apple juice, orange juice, regular (non G2) gatorade.  To my relief, my muscles felt fine.

I knew I needed to either get home or wait out an illness in a hotel.  I called the front desk and they were unable to extend my stay, so I booked a flight home.  I then took the first of the antibiotics, so that I would be on them for 24 hours prior to my flight.  I did not want to fly contagious.

I then made the mistake of getting into bed in the hotel.  I didn't have a thermometer, but I'm pretty sure I developed a fever, because I turned the thermostat way up, but felt very cold.  So cold, in fact, that when I needed to use the restroom, I waited until the heater fan turned off because the breeze from the heater was too chilling.

At this point, my muscles still felt completely fine.  I realized that I needed to somehow make it downstairs and across the street to buy more sugar drinks.  It took me a while to work myself up to where I actually got out of bed.  I finally got downstairs, bought a ten-pack of orange juice and a handful of Gatorades and rushed back to the room.

I got into bed and basically did not get up for around over 12 hours.  Aspirin with Codeine is sold over the counter in Canada, so I would take one and get a couple of hours of sleep, be up for a couple of hours, take another, etc.

My flight home was early afternoon, so having finished all of the Gatorade and almost all of the juice, and with the second antibiotic on board (so I was now 24 hours on antibiotics), I headed to the airport.

Both flights were easy, although I'm pretty sure I annoyed the flight attendant on the first flight by asking for apple juice about half a dozen times.  I was determined to make sure I had enough sugar in me to avoid muscle breakdown.  During the layover, I had more juice.

Finally, I made it home around 9:30 pm.  More liquids and off to bed.

Waking to a Whimper:

Around 4 am, intense pain in my upper arms and shoulders woke me and I started to cry out in pain.  I remember it as whimpering, but my wife is pretty clear that it was something between crying out and crying.  I told her "I can't move my arms", which understandably freaked her out.  What I meant to say was "It hurts too much to move my arms", but either way it was bad.

By now, my body was in CPT2 muscle breakdown.  I was cognitively impaired (goes along with CPT2 episodes often), and because of the very unusual circumstances (lots of sugar for 48 hours prior to episode, episode impacting primarily upper, not lower, body) I had trouble seeing that this was a CPT2 episode.  My wife, of course, figured it out immediately and told me to go to the hospital ER.

Rather than do that (because, I'd like to think, of the cognitive impairment), I called my doctor when his office opened and asked if I could get a stat CK test to see if I was in muscle breakdown.  I left the message with his nurse and never heard back (I still haven't).  After 90 minutes, I gave up on the idea of going through my doctor and went to the ER.

Thanks to my proper ER protocol letter and my pretty long-winded explanation of what CPT2 is and how it works, they did an EKG right away together with a CK blood draw.

Surprise -- the CK test came back at around 9,000.  They admitted me to the hospital.  As an aside, the treatment at the hospital, St. Agnes, has been (as of right now) stellar.  I have literally no complaints about how things have gone.  The staff was super friendly and helpful, and there was plenty of empathic treatment.

What?  It rose?

In the ER I was given D10 and IV Carnitor.  So with 48 hours of high sugar availability, D10 drip and Carnitor, I was admitted and they did a second blood draw.  I was pretty shocked that my CK more than doubled from the first reading.

I don't understand this disorder as well as I thought:

Until now, CPT2 was the only disease that could be cured with a regular coke and a pizza.  I turns out that this is not the case.  I was not in carb deficit.  I was being given carbs via IV.  Still, the breakdown continued.  I'm awaiting my third test and praying that it has stopped rising.

What does this mean?

It means that there are outlier episodes where the normal steps are ineffective in preventing onset or stopping progression.  It also means I'm going to research this more, because at the moment it is a bit scary to feel like I'm starting over with my understanding of CPT2.