Subject: Re: How important is it to pursue diagnosis

[Guest guest]

See, this is what i mean about how useful the stuff I find

on this list is. The perfect comeback, and concisely

stating what I was trying to get across to the doc ...

Thank you!

>Perhaps others have posted on this, but although there

>isn't a cure

>for mito, there is treatment. There is not a cure for

>diabetes,

>would your doctor say " why worry about it? " to a diabetic

and not

>treat them?

>Take care,

>RH

--

***********************************************************

Kelta Vineyard

__________________________________________________________

Find your next car at http://autos.yahoo.ca

[Guest guest]

--- Drotos rdrotos@...> wrote:

> See, this is what i mean about how useful the stuff

> I find

> on this list is. The perfect comeback, and concisely

> stating what I was trying to get across to the doc

> ...

,

Your doctor may not see things this way. After all,

the treatment for mito is NOT proven. There are no

studies to show its efficacy. Until there are,

physicians will say that there is no treatment. We

need controlled scientific studies.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Once when a doctor who knew little about me or my disorder told me

categorically that there was no treatment for my disease, I simply reached

into my purse and pulled out a copy of " Treatment of Mitochondrial

Cytopathies " by Drs Cohen and Gold and handed it to him. I didn't have to

say a word. He was quite chagrined and never made that statement again!

Of course, not all patients respond to all treatments, but some patients

respond dramatically to some treatments. Yes, these are anecdotal reports,

but that's where learning/understanding starts with rare disorders, with

individual patients responding to treatments and physicians reporting those

responses. Small studies do exist and the larger studies will come.

Meanwhile I am glad I have a team of doctors who believe in the treatments.

Treatment of Mitochondrial Cytopathies

http://www.medscape.com/viewarticle/410871_print

Barbara

> Re: How important is it to pursue

diagnosis

>

>

>

> --- Drotos rdrotos@...> wrote:

>

> > See, this is what i mean about how useful the stuff

> > I find

> > on this list is. The perfect comeback, and concisely

> > stating what I was trying to get across to the doc

> > ...

>

> ,

>

> Your doctor may not see things this way. After all,

> the treatment for mito is NOT proven. There are no

> studies to show its efficacy. Until there are,

> physicians will say that there is no treatment. We

> need controlled scientific studies.

>

>

[Guest guest]

PS. Tarnopolsky et al have done excellent studies on the use of creatine

monohydrate in various neuromuscular disorders, including mitochondrial

myopathy. Yes, they have " proven " increased strength based on objective

measurements. This is just one example of the studies that do exist.

B

> Re: How important is it to pursue

> diagnosis

> >

> >

> >

> > --- Drotos rdrotos@...> wrote:

> >

> > > See, this is what i mean about how useful the stuff

> > > I find

> > > on this list is. The perfect comeback, and concisely

> > > stating what I was trying to get across to the doc

> > > ...

> >

> > ,

> >

> > Your doctor may not see things this way. After all,

> > the treatment for mito is NOT proven. There are no

> > studies to show its efficacy. Until there are,

> > physicians will say that there is no treatment. We

> > need controlled scientific studies.

> >

> >

>