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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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\
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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
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