Asking a question for a friend

[Guest guest]

Hi Laurie,

I could have misunderstood what Dr Korson told me, but I believe I questioned

him to clarify as it seemed like such a low percentage. Dr Korson is at a

medical center that believes the live muscle biopsy is the way to go. But in

the Boston area there are other specialists who feel a frozen biopsy is just as

good. I still can't figure out why.

So I am not sure where to get accurate figures on how much of a percentage of

Mito patients manage to get a definitive diagnosis with actual biopsy and

other test results. Even Dr Cohen in a chat reported that he has at least 9

patients that have no corroborating test results but he is posiitve they have

Mito.

I wonder if the Mito Foundation keeps track of those statistics?

Adam

In a message dated 5/12/2004 5:32:25 PM Eastern Standard Time,

writes:

> Adam

>

> I'm thinking that low a percentage is from frozen muscle biopsies and not

> the ones on fresh tissue to test for respiratory chain function.

>

> laurie

>

[Guest guest]

Adam

I got to thinking about this and wonder if that statistic is for those who

end up with a diagnosis of MEERF, MELAS, MID or some of the others. I have

had two positive biopsies showing the complexes that aren't working

properly, but don't have a specific kind of mito.

on the list (who is my sister) sees Dr. Cohen and her biopsy was

negative, but with the family history, lab results and family history, he

feels she has mito.

I will have to do some reading on the subject and see if I can figure it

out.

laurie

> From: AdamM321@...

> Reply-To:

> Date: Thu, 13 May 2004 05:03:41 EDT

> To:

> Subject: Asking a question for a friend

>

> Hi Laurie,

>

> I could have misunderstood what Dr Korson told me, but I believe I questioned

> him to clarify as it seemed like such a low percentage. Dr Korson is at a

> medical center that believes the live muscle biopsy is the way to go. But in

> the Boston area there are other specialists who feel a frozen biopsy is just

> as

> good. I still can't figure out why.

>

> So I am not sure where to get accurate figures on how much of a percentage of

> Mito patients manage to get a definitive diagnosis with actual biopsy and

> other test results. Even Dr Cohen in a chat reported that he has at least 9

> patients that have no corroborating test results but he is posiitve they have

> Mito.

>

> I wonder if the Mito Foundation keeps track of those statistics?

>

> Adam

>

> In a message dated 5/12/2004 5:32:25 PM Eastern Standard Time,

> writes:

>

>> Adam

>>

>> I'm thinking that low a percentage is from frozen muscle biopsies and not

>> the ones on fresh tissue to test for respiratory chain function.

>>

>> laurie

>>

>

>

>

>