Robert,

A commercially available blood test now exists to
determine dysferlin deficiency. I had one completed
about 2 years ago just to confirm my diagnosis of
LGMD-2b (Miyoshi Myopathy).

For those searching for hope and comfort in dealing
the challenges we face, I boast in my Lord Jesus. He
has provided me with a peace and joy that I never knew
even when I was physically healthy. In 15 years, I
have deteriorated physically from a healthy and strong
athlete to someone who depends on a powered wheelchair
and who does not walk at all. Yet, I can awake each
day and know that I am not facing my challenges on my
own power and that these challenges are only
temporary. Two verses that encourage me are these:

Psalm 147:10-11 - "He does not delight in the strength
of the horse; he does not take pleasure in the legs of
a man. The Lord favors those who fear Him, those who
wait for His lovingkindness."

2 Corinthians 12:9-10 - "And He has said to me, 'My
grace is sufficient for you, for power is perfected in
weakness.' Most gladly, therefore, I will rather boast
about my weaknesses, so that the power of Christ may
dwell in me. Therefore, I am well content with
weaknesses, with insults, with distresses, with
persecutions, with difficulties, for Christ's sake;
for when I am weak, then I am strong."

Lary

--- dysferlin@yahoogroups.com wrote:

> There are 3 messages in this issue.
>
> Topics in this digest:
>
> 1. testing?
> From: "Robert Duke" <bobby@...>
> 2. Re: new to the concept
> From: "irish_lass212004"
> <irish_lass212004@...>
> 3. Re: Re: new to the concept
> From: "Suzanne Croft"
> <joesuzi.croft@...>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Mon, 04 Jul 2005 21:01:54 -0000
> From: "Robert Duke" <bobby@...>
> Subject: testing?
>
> I'v been a member of the group since 2001 and look
> in every once in a
> while to see what's going on. I'm a 55 year old
> male with lgmd. I
> haven't been re evaluated in years to see what sub
> catagory I would
> fit in today. I saw little need to know in the past
> with so little
> progress being made in gene therapy clinical trials.
> I figure now may
> a good time to get re-evaluated. I'v had 3 muscle
> biopsys done in my
> life - Dallas, New Orleans and Los Angeles. Is a
> muscle biopsy still
> required to distinguish between the different types
> of lgmd or are
> blood tests available now? I haven't kept up with
> the latest research
> and testing.
>
> Thanks,
>
> Robert
>
>
>
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 2
> Date: Thu, 30 Jun 2005 19:03:35 -0000
> From: "irish_lass212004"
> <irish_lass212004@...>
> Subject: Re: new to the concept
>
> I am 22 and have had muscular dystrophy for about 8
> years. I have
> recently been informed that I have Dysferlin
> Dystrophy. I don't
> really know much about it and would like to hear
> from anyone that
> can help me with this. At prpesent the legs and
> feet are only
> affected. My legs just go from below me and before
> I know it I am
> on the ground. I do get very depressed at times and
> feel so low.
>
> Please if anyone knows more about dysferlin, I would
> Appreciate it.
>
> Irish_lass212004
>
> --- In dysferlin@yahoogroups.com, "irish_lass212004"
>
> <irish_lass212004@y...> wrote:
> > --- In dysferlin@yahoogroups.com, "katyanihoney34"
>
> <Kjviccary@a...>
> > wrote:
> > > I feel quite alone, for a while i have known
> there is something
> > wrong
> > > with me i feel weak alot of the time,ihave not
> been diagnosed
> but
> > > think that i may have a dysferlin deficiency i
> have no idea
> what
> > > medical history my familyhave but am 20 years
> old, and feel
> like i
> > > am 40/50! what should i do to find out if i am
> one of these
> people,
> > > my upper body is thin/gaunt my leg muscles are
> big in the thighs
> > but
> > > not strong,
> > > tips/advice extreamly welcome!
> > > Katie
> > > Kjviccary@a...
>
>
>
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 3
> Date: Fri, 1 Jul 2005 18:29:16 +0100 (GMT
> Standard Time)
> From: "Suzanne Croft" <joesuzi.croft@...>
> Subject: Re: Re: new to the concept
>
> Hi Katie
> I'm 36 now & have had symptoms since I was in my
> early twenties. Have been
> diagnosed with Miyoshi Distal Myopathy for about 7
> years now. My condition
> is gradually getting worse - I walk short distances
> with an elbow crutch,
> stairs are impossible and I find it very difficult
> to get up from chairs.
> That said, it has just become of my life and I deal
> with each problem as it
> arises. The power of positive thinking is amazing.
> I am married, have two
> young children, work part-time & manage the house so
> don't let it take over
> your life! I'd be happy to talk to anyone who wants
> support or just a chat!
> It'd be nice to know I'm not the only sufferer in
> UK!!!
> Suzanne
>
>
> -------Original Message-------
>
> From: irish_lass212004
> Date: 06/30/05 02:52:54
> To: dysferlin@yahoogroups.com
> Subject: [dysferlin] Re: new to the concept
>
> --- In dysferlin@yahoogroups.com, "katyanihoney34"
> <Kjviccary@a...>
> wrote:
> > I feel quite alone, for a while i have known there
> is something
> wrong
> > with me i feel weak alot of the time,ihave not
> been diagnosed but
> > think that i may have a dysferlin deficiency i
> have no idea what
> > medical history my familyhave but am 20 years
> old, and feel like i
> > am 40/50! what should i do to find out if i am
> one of these people,
> > my upper body is thin/gaunt my leg muscles are big
> in the thighs
> but
> > not strong,
> > tips/advice extreamly welcome!
> > Katie
> > Kjviccary@a...
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
> [This message contained attachments]
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
>
>
>
------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
=== message truncated ===


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