Sunday, April 19, 2009

April 19: CK Level Drops to 74!!!

Excellent News! This morning the nurses took a few vials of my blood to check my levels. I learned this afternoon that everything was "normal." I then asked specifically about my CK level. CK is short of Creatine Kinase which is a type of protein called an enzyme. It catalyzes or "encourages" a biochemical reaction to occur. The normal function of CK in our cells is to add a phosphate group to creatine, turning it into the high-energy molecule phosphocreatine which is burned as a quick source of energy by our cells.

During the process of muscle degeneration, as in FSH muscular dystrophy patients, muscle cells break open and find their way into the blood stream. Because most of the CK in the body normally exists in muscle, a rise in the amount of CK in the blood indicates that muscle damage has occurred or is occurring. In healthy adults, the CK levels can vary depending on gender, race and activity, but normal range is 22 to 198.

Arguably, CK is not a definitive measure of the progression of any muscular disorder, but in my case I have monitored it for the past 10+ years based on my doctor's tests. Below is a chart of those numbers. When I arrived in China in mid-March for my treatment, my CK was 188, a drop from 209 in November of '08. Now it's at 74 which may indicate the progression of my disease has slowed down or stopped altogether!


  1. Russ, good news about your blood levels but is it long lasting or just a reflection of what's been going on with all your shots? Will they tell you? Do they know? Iva

  2. Russ-
    That is great news!! I hope it continues for you and that you see some amazing results from all of your hard work. Try to enjoy your last few days in China!
    See you soon~

  3. Russell-
    We are so excited to see you back and hear about your trip! We are looking forward to great things. Have a safe trip back and we'll see you on Monday!

  4. Great news about the CK level. I emailed you a week ago regarding my son with DMD--we were very interested in the video you blogged about the young boy with MD--much improved after treatment. Is there anyway you can find out what kind of MD he has. It would be very helpful to us. Thanks so Much --All The best to you.

  5. Russell Calvin:
    I am so happy that all of this is going so well for you. I cannot wait to hear your stories and have you back at work. Miss you.

  6. Sounds great! I hope and pray it works for you.
    I have a nine year old son with DMD and I'm very interested to know more about how you have progressed, and also Wang Yisheng if you happen to have the information.I would be grateful for that. At least I'm beginning to see some hope for my son. Thank you.


  7. Iva,

    It's too soon to tell whether my CK level is long-lasting or just a reflection of the treatment. I will continue to get it checked every 3-4 months and update my blog with the info.

  8. Another such informative post, I am truly impressed.

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  9. Russel: I have a 17 years old daughter with FSHD, and am of course very interested in your treatment. Do yout know of any "independent" , scientific evaluation of the treatment you are undergoing?
    Best regards,
    Arvid Karlsen, Norway