Marian:

After the preliminary diagnosis at a local hospital,
our daughter was given two choices of locations for
treatment for LGMD2B. The two choices were the
University of Iowa Hospitals and Clinics and Mayo
Clinic. Our local MDA director also informed us that
these two locations were the only place that knew how
to treat this disease. Our doctors were really
pushing us to go to Mayo. We started going to Mayo
about 9 months ago. They offer little treatment other
than treating the symptoms.

We have been doing extensive research into alternative
treatments and have been discussing them with her
doctors. We are hoping that these will have some
affect.

Do you know of any alternative treatments? Have you
tried any types of treatments?

Thanks
Karyl

--- "Ryan,Marian" <Mryan@...> wrote:

> Hello Karyl,
>
> I haven't heard of anyone being treated for LGMD 2B
> at the Mayo Clinic. Could you share with us what
> approaches are being used? I'm currently living in
> England, but went to the clinic at Georgetown for a
> few years, where basically no treatment was given or
> recommended, so I'm interested to hear what your
> family's experience is.
>
> Cheers,
> Marian
>
> ________________________________
>
> From: dysferlin@yahoogroups.com
> [mailto:dysferlin@yahoogroups.com]
> Sent: Sun 3/2/2008 9:08 AM
> To: dysferlin@yahoogroups.com
> Subject: [dysferlin] Digest Number 140
>
>
> Dysferlin Deficiency
>
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> Messages In This Digest (1 Message)
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> 1a.
> Re: Treatment
>
<https://exchange.msh.org/Exchange/Mryan/Drafts/RE:%20%5Bdysferlin%5D%20Digest%2\
0Number%20140.EML/1_text.htm#1a>
> From: Karyl Smith
>
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> 1a.
>
>
> Re: Treatment
>
<http://groups.yahoo.com/group/dysferlin/message/267;_ylc=X3oDMTJwNzQ4M2ZwBF9TAz\
k3MzU5NzE1BGdycElkAzMzNzY4ODEEZ3Jwc3BJZAMxNzA1MDYxNzc2BG1zZ0lkAzI2NwRzZWMDZG1zZw\
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>
> Posted by: "Karyl Smith" iowasmith@...
> <mailto:iowasmith@...?Subject=
> Re%3A%20Treatment> iowasmith
> <http://profiles.yahoo.com/iowasmith>
>
>
> Sat Mar 1, 2008 2:50 pm (PST)
>
> Thank you so much for replying.
>
> We first noticed a few signs when our daughter was
> 20
> but they came so slow, then all of a sudden the
> symptoms worsened and she went through testing and
> it
> was determined to be Limb-Girdle Muscular Dystrophy
> 2B.
>
> She just turned 25 and is being treated at the Mayo
> Clinic in Rochester, MN. The doctors there are
> excellent and she is getting great care but I am
> searching to make sure that we are not overlooking
> some other type of treatment or therapy.
>
> Do you notice a difference taking creatine and
> CoQ10?
>
> Thanks again
> Karyl
> --- John B <bluedestin@...
> <mailto:bluedestin%40yahoo.com> > wrote:
>
> > I was diagnosed at age 18 when I first started to
> > notice signs of this disease. I am 24 now. I have
> > Miyoshi Myopathy which is the other type
> associated
> > with the loss of dysferlin protein. My doctor
> > prescribed creatine and CoQ10. Check with your
> > doctor to confirm if these treatments would be
> > suitable. My doctor also wanted me to do light
> > aerobic exercise (pool being the best choice). He
> > said it might slow down the progression of my
> muscle
> > weakness. Again...I am a patient, go talk to a
> > doctor. I hope this helps.
> >
> > iowasmith <iowasmith@...
> <mailto:iowasmith%40yahoo.com> > wrote: Can
> > anyone please tell me if they have had any
> success
> > in the treatment
> > of Limb-Girdle 2B. Does physical therapy help?
> Does
> > a vitamen regime
> > help?
> >
> > We are grasping to find help for our daughter who
> > was recently
> > diagnosised.
> >
> > Thank you
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Be a better friend, newshound, and know-it-all
> with
> > Yahoo! Mobile. Try it now.
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>
>
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