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dysferlin · Dysferlin Deficiency
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Reply | Forward Message #267 of 592 |
Re: [dysferlin] Treatment

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@...> 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@...> 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
>
>
>
>
>
>
> ---------------------------------
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Sat Mar 1, 2008 10:50 pm

iowasmith
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Message #267 of 592 |
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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...
iowasmith
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Feb 29, 2008
1:18 am

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...
John B
bluedestin
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Feb 29, 2008
9:58 pm

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...
Karyl Smith
iowasmith
Offline Send Email
Mar 1, 2008
10:50 pm

Unfortunately, I have a bad habbit of not following through on things...I haven't taken those two items long enough to really notice a difference. I should be...
John B
bluedestin
Offline Send Email
Mar 3, 2008
1:53 pm
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