yes, i think we all need to do less mouth stuffing! hahaha. i really
enjoy eating too but my metabolism is slower and without as much
muscle mass as when i was younger, my body just doesn't need all those
calories anymore! I know that the disease is supposed to be an
inherited recessive trait but nobody in my family has any similar
symptoms and my immediate family all have normal CPK levels so i think
i may be a sporadic case. do you are anybody else here have any other
family members with disease or carrier traits?

--- In dysferlin@yahoogroups.com, Philip and/or Christina
<soonerpgh@...> wrote:
>
> I just found out about mine, as you know, well, at least
specifically what kind of mutant I am.
>
> I am only 34, but I am about 10 years ahead of you as far as
progression goes. I remember the days you describe, where the stairs
were tough. Now, it's to the point where a step, curb, whatever, may
as well be Mount Everest. I hated the idea of a wheelchair and fought
it like it would be the death of me. Actually, it has been the best
thing I have done in a long time. I can now go places without having
to lean on my wife going up/down hills, and all of that. While there
are some cons, I think the pros out-weigh them by a ton, at least in
my case.
>
> The worst part is the no exercise and the inevitable weight gain.
However, I was gaining the weight before I go tthe chair, so maybe
I'm just making excuses. I just need to slow down on the
mouth-stuffing. That would help me as much as anything.
>
> xron922 <ronchao1@...> wrote:
> Hey Philip!
>
> Welcome. It's always great to meet other people with my disease on
> here. I have Miyoshi like you and Brad which was diagnosed at 23. I'm
> 36 now and still walk without a wheelchair but can't run and have
> trouble getting up stairs. I'm actually really scared about the
> prospect of having to use a wheelchair someday but i guess it's not
> that bad really. I think one study i read said that 1/3 of the
> patients eventually required wheelchairs and there was like 1 patient
> in a case report i read that was bedridden. I guess there's alot of
> individual variation with this disease, but the longer you have it the
> more it progresses. It's certainly frustrating not being as active and
> athletic as i was when i was younger, but it's always great to talk
> with others for support. Hope you all have a great summer!
>
> Ron
>
> --- In dysferlin@yahoogroups.com, "baw1064" <bwilliams163@> wrote:
> >
> > Glad to have you join the group. I have Miyoshi also, and had
> > symptoms beginning at 18. I'm 43 now, and have used a wheelchari
> > for the last 4 years. Like you, I found that not constantly having
> > to worry about falling was a big incentive to be willing to leave
> > the house.
> >
> > I'm sure there are several other members who will also be happy to
> > share their stories. Please ask any questions you may have.
> >
> > Brad
> >
> >
> > --- In dysferlin@yahoogroups.com, "biscuitsmom30" <soonerpgh@>
> > wrote:
> > >
> > > I was just diagnosed yesterday with Miyoshi Myopathy. I was
> > > originally diagnosed with LGMD when I was 18 (started having
> > symptoms
> > > at 15). They were able to diagnose me with Miyoshi after a blood
> > > test. I am 34 now and I have been using an electric wheelchair
> > for
> > > the past year. After a series of terrible falls, I decided that a
> > > wheelchair didn't sound so bad after all. It turned out to be a
> > good
> > > decision for me. I can now go places with my family and enjoy
> > their
> > > company instead of huffing and puffing and worrying about falling
> > the
> > > whole time. My legs are basically gone at this point and my arms
> > are
> > > weak, especially my biceps. I am married with 4 kids. Two boys
> > and
> > > two girls. I'm new to this disorder so any information is
> > appreciated.
> > > Thanks,
> > > Philip
> > >
> >
>