I have had 2 muscle biopsies one from right leg which showed moth eaten fibers and one from left leg which showed Type 2 muscle tissue is affected. Muscles are really breaking down, but Doctors do not know why. Muscles are also rebuilding themselves. My CPK level was an average of 1500 from 2001- 2005 . I know CPK is an enzyme that is released into the blood when muscle tissue is damaged and that normal is about 200. While working as an adjunct professor CPK level increased to 8000 3 months later 15000 in 2007. I am no longer working CPK 3000 - 6000 varies, checked about every 3 months. I do not do anything other than daily living activities. I do not drink or smoke. There is Muscle fatigue and pain in all parts of body every movement I make takes effort and feels like doing a workout with weights along with soreness afterwards this is a constant issue. I have not lost strength in my body its just extremely difficult and painful doing things: Brushing teeth, taking share, walking, standing, etc. I do have some joints in my feet that should be flexible but instead are stationary and some that should be stationary that are moving. I also have fingers being pulled out of place by tendons and muscles. I have had several occurrences of urine turning a coke cola color and during this time run a fever of 101 and feel very sick as well chills this usually last a couple of days. I have had a myoglobin test with results being normal. I do have another disorder, Arthrogryposis. One Neurological Doctor believes I have an Unknown type of progressive Muscular Dystrophy, another Neurologist thinks it may be Hereditary Spastic Para Parisi. The problem is I have some symptoms but not all and some things contradicting both diagnosis. I have seen a rheumatologist he said he could not help with any answers. I have been told there is no answers, no treatment. I am in a lot of pain but I have had this all my life and do not want to take any pain medicine. I am more concerned with stopping the high CPK levels. The Specialist at Vanderbilt said that its not one activity that I causing the high CPK its all my activities. I know I need to drink a lot of water to help flush Kidneys. Thanks for help.
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