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Re: Digest Number 2690

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My son has had two normal muscle biopsies done. The first left about

a two inch scar on his thigh that is quite faint. The second is about4

inches long, bright pink and raised. And we learned nothing useful from it.

I wouldn't put him though another one again.

Alison

Re: Saw our Genetic dr today

>

> Hi :

>

> I felt I needed to respond to your email. Leah too has what is called a

proliferation of mitochondria cells in her body; meaning too many. And if

memory serves me right, that can be just as bad. I'll see if my husband

remembers everything they told me about that. Leah had another muscle

biopsy done just in the beginning of June and they are checking on not only

that, but it was sent to town University for a study being done on

mutation. Wish I could help more. But wanted to let you know that. Except

Leah doesn't crash. Only when she gets ill does she sleep more.

>

> Nerenhausen

> mom to LEah

>

> Angels4hailee@... wrote:

>

> > Well today was our yearly genetic dr appointment. Our genetic dr is

still so very stumpted as to what miss hailee has..

> > They found her missing chart and he pulled her muscle biopsy which was

frozen and sent to Buffalo Ny for testing, it came back negative for

mitocondrial, but he said the labs didnt make sense so now he has to call

his partner who is in Europe to discuss hailee with him again.. The lab test

came back showing that she produces an overabudance of mitocondrials...

Which he says makes no sense since she still has all the crashes. Except

that we do have two other disorders on top of the suspected mito. So this

makes no sense to him, he has never seen it, and dosnt know how to explain

it.. Does anyone have any ideas?? We are still have crashing cycles every

6-8 weeks with admits for up to 4 weeks at a time. She still tires very

easy and has many of the symptoms but now we have a negative mito test...

Help.. How conclusive is the muscle biopsy test?? Do i look else where??

> > , Hailees mom

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >

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