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    Old 11-21-2010, 07:42 AM   #1
    Join Date: Mar 2009
    Location: Silver Spring, MD
    Posts: 71
    Monnie45 HB User
    Living alone

    Hi, I am 65 years old, diagnosed several years ago with myotonic dystrophy 2and at this point my symptoms are not life altering. I am still working as a hygienist, getting tired, though and ready to retire. I have difficulty with stairs but live on the lower floor of a condo, no steps. My real concern, though, is that I live alone. Although my symptoms don't seem to progressing fast I am frightened. I have daughter who lives several miles away and another about 45 minutes from me. I don't want to be dependent on them. My CPK is around 600-700 and I wonder if that indicates how fast the disease is progressing. Any imput?


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    Old 11-22-2010, 12:51 PM   #2
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    Join Date: Dec 2004
    Location: Michigan
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    Re: Living alone

    Hey Marlene,

    Blood CK, also know as Creatine Kinase or CPK, also know as Creatine phosphokinase, is an enzyme that is found within muscle cells. When a muscle cell is ruptured or dies the CPK leaks into the system where it's carried away by the bloodstream. Normally the CPK level in a healthy person is 80-120. If a weightlifter has a hard workout and wakes up sore the next morning his level might read very elevated...500-1000 because he has damaged some of his muscle cells. In HIS situation however, the cells will be replaced with new cells plus a few extras for good measure. In our situation, MD patients won't replace the damaged cells

    I have LGMD. My CPK was always 500-550 when first diagnosed. Now it's around 350. I contribute this reduced level to the fact that I no longer have nearly as much muscle mass.......millions of fewer cells to damage.

    Some Muscular Dystrophies have extremely high CPK levels. Duchenne's for instance can have CPK readings of 50,000 - 100,000 because the nature of that illness is that the cells are falling apart by the millions.

    Your level is not too high which generally means a less aggressive and slower progression disease. I know this was a very technical answer but I hope it helps.

    I am impressed that you live alone. I couldn't possibly in my colonial home. I am lucky that I have a helpful and patient wife and daughters.

    Take care,


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