RE: Re: How important is it to pursue diagnosis

[Guest guest]

,

I'm not sure that pursing a diagnosis will get you

anything more. If it will, I'd do it. If not, why

bother? Can you try the cocktail and see if it helps?

Would your doc put you on a trial of Carnitor? All of

the other stuff is OTC.

Mom to the two best kids in the world!

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

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[Guest guest]

I understand this, Dolores. It was because my son had symptoms that I kept

looking for answers--or I should say, that was one of the main reasons. I

wanted answers too. By the time he was five, I knew he had whatever I had,

though at that time (1979) no one had even heard of mitochondrial disease.

When he was 9, I got the CPT diagnosis (which was miraculous, given the way

it happened) and within 6 months his diagnosis was confirmed by muscle

biopsy. I kept looking for MORE answers beyond CPT because it became

apparent that there was more than CPT going on, and that second broad mito

defect diagnosis didn't come until1998.

I have always been an active participant in research projects and this again

was because I wanted my son to be able to benefit from knowing as much as

possible about our family biochemistry and how to treat it. We still have

lots of unanswered questions, but I will keep searching and looking and

volunteering. Partly this is because I am by nature a very curious person

and I like to try to puzzle through all these biochemical mysteries. But my

son has always been the primary motivator. I want to leave him all the help

I can find--a good sort of inheritance to pass on, a way to manage the

messed-up biochemical inheritance he got from me.

Cure, no, but treatment, management, understanding, learning, yes!

Take care,

Barbara

> I will continue to keep looking for an answer for the sake of my surviving

Son, for

> my Grandchildren and Great-grandchildren, even though my PCP won't even

> discuss it with me all she will say is, " what makes the difference there

is no cure " .

> The main reason I am going to take that trip to KU is for their sake.

Dolores

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