--- In dysferlin@yahoogroups.com, "baw1064" <bwilliams163@...> wrote:
>
> Hello to all group members,
>
> I encourage anyone who has not already done so to register with the
> Jain foundation.
>
> http://www.jain-foundation.org
> Best wishes,
> Brad
>

I just did! And I also became a member of this group because I hope
I will get more information here then what I get from my neurologist.
I was diagnosed Miyoshi just over a year ago. They took some tissue
from a muscle.
My CK is a lot higher then normal (3800)and there is an absent of
dysferlin. Since about 7 years ago I started having problems with
standing on my toes.

The strange thing is that I can still walk long distances, like the 4-
days walk in Nijmegen (in Holland, that's where I live) in July.
There I walk 40km a day
and I hope I can still do that next year.
I am 52 years old now and I notice that a lot of the members are
younger.