Bryan-

Here is what I know about dysferlinopathy, dysferlin, and muscle
enzyme levels. Dysferlin and muscle enzymes are two different
things. Dysferlin is a protein, when mutated or absent, causes two
forms of muscular dystrophy. LGMD2B and Miyoshi. For more
information on what dysferlin is check out www.jain-foundation.org.
On the left side of the page is a link to FAQ's. There is some great
information on what dysferlin is and how it a protein and differs
from a muscle enzyme. As far as the elevated muscle enzyme, I
believe you mean CK or Creatine Kinase. This is an enzyme that is
present due to muscle deterioration. I normal person has a normal
CK level at around 175. With these muscle disorders, our muscles
deteriorate at a higher rate in return causing a higher CK level.
It can vary drastically. When I was first diagnosed I had a CK
level at 16,000+. 6 months later it was 4,500. Many things may
have an impact on these levels. I found some great information on
http://findarticles.com/p/articles/mi_qa4100/is_200511/ai_n15847048
This article explains in great detail what Creatine Kinase is. I
really hope this helps. Again, I am new to this and still
researching what all these things are. I am not a doctor. But I do
hope to become an expert.

-Samantha


P.S. Isn't all this activity on this site great?!! Let's keep it
up!!



--- In dysferlin@yahoogroups.com, Bryan Nickell <b5sense@...> wrote:
>
> Hi everyone,
> I haven't written in a long time but the recent
> activity it's made me want to write in. I'm 28 years
> old and was diagnosed with Miyoshi Myopathy about four
> years ago. They did a couple of tests to confirm and
> my muscle enzyme level was around 30,000. They felt
> confident in the diagnosis but then they did a special
> blood test through the Mayo Clinic and they found the
> presence of dysferlin. Has anyone else had an
> experience like this? I just find it a bit odd that I
> was diagnosed with a dysferlinopathy, which to my
> understanding means that you don't have dysferlin, yet
> here I am with dysferlin. I wear the Blue Rocker leg
> braces on both legs and my doctors have been impressed
> with my mobility in them. They are still a pain in the
> butt to wear, but they do help so much. This is a very
> scary and sometimes lonely diagnosis to have so while
> I'm sad that any of us have to go through this, I'm
> glad to hear from you all every once in a while.
> Good luck and take care,
> Bryan
>
>
>
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