I had a CPK test scheduled for yesterday to see if my numbers had come down to normal. I was above the 20,000 maximum test limit on August 20. By August 23, I was at 16,078. I remained high seven days after my rhabdo, measuring 423 on August 27.
Yesterday morning I awoke with muscle pain. It was in my lower legs and lower back, and it felt dead-on like the beginning of a CPT2 episode. I had MCT oil, corn starch, Gatorade, carbs -- you know, the usual stuff I do when I feel a CPT2 episode coming on. My muscles remained sore -- and I continued to feel like I was having an episode -- when I had my blood drawn at 1:38 p.m. I tested at the high end of normal, 138.
This is a very interesting piece of information. It means that there is a significant time window in between feeling markedly symptomatic and incurring enough rhabdomyolysis to elevate my CPK. I doubt that intervention will stop the rhabdomyolysis every time. In fact, I'm pretty sure it won't. But knowing that an episode can start and end without triggering seriously elevated CPK feels like an important data point.
While I was hospitalized, I couldn't find a source for how fast CPK numbers come down. I'm sure everybody's numbers drop at different rates, but here is my recent CPK history, in case somebody finds it helpful.
Is there any way you would email me? I have some undiagnosed condition that is, almost textbook to CPT II deficiency disorder... with one exception. Which is where your help is greatly needed/requested.
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