It sounds like you had a very extensive evaluation when this diagnosis was initially established. However, your current levels of CK would seem to high to be explained by hyper CK. Excercise and
medicationAllergic reactions to medication
Drug allergies
Drug-induced hypertension
Getting a prescription filled
Home pharmacy
Inhaler medication administration would need to be excluded as a possibility for the change. If these have not changed, it may be worth while to do some re-investigation. If you do this, I would recommend obtaining all your old records and having a consult at a large academic center. If you are in the area, we have many experienced neuromuscular specialists. Good luck.