Re: DNA testing, (Laurie, )

[Guest guest]

What was relayed to me from USCD is that I was in good hands with my

local doctor (they were aware I was seeing the MDA doctor) and that

for the biopsy I should forward the histology report to them, do EM

on muscle, freeze half, and do an Electron Transport Assy.

The decision to do the biopsy locally and frozen wasn't easy -

especially knowing your story (and others). I obviously live on the

wrong coast and my options seem to be limited.

I've been told by three doctors ( " THE " local MDA which everyone here

knows and respects, Dr. Haas at UCSD and a well respected neuro at

Mayo) that I don't need a fresh biopsy. The doctor at Mayo became

so aggitated that I believed results of a fresh biopsy would be

better - that his face reddened as he told me to stop listening to

people who told me this - they are just wrong! I'm left to wonder

why doctors think it is so strange that I would question this -

especially since this controversial issue is on the agenda at the

upcoming symposium in PA. Obviously I've only been encountering

doctors with the opposing view.

I appreciate you and Laurie sharing your stories with me. I know

that some people have gotten a diagnosis with frozen tissue, and I'm

hoping that I will be one of those who can. It's a gamble. One I

wish I didn't have to take, but for various reasons - traveling to

Atlanta is not an easy option for me either. At this point, I'm

not even sure it is an option - as I was confident that USCD would

see me also - but it turned out not to be the case (after waiting

for months for a doctor there to review my records). It seems like

they are just very busy.

Maggie

> >>>

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> >>>>Maggie

> >>>>

> >>>>My personal feeling is that all of our doctors need to know as

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> >>>much about us

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> >>>>as possible. In other words, tell the surgeon.

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> >>>>Good luck with the biopsy.

> >>>>

> >>>>laurie

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> >>>>

> >>>>>From: " whoewe2002 " <whoewe2002@y...>

> >>>>>Reply-To:

> >>>>>Date: Sun, 07 Mar 2004 17:39:34 -0000

> >>>>>To:

> >>>>>Subject: DNA testing

> >>>>>

> >>>>>I got the results back from my mtDNA testing and they found

> >>>>>nothing. The test was done prior to a biopsy and apparently

> >>>>>

> >>>>>

> >from

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> >>>>>what I've now read - it looks like there wasn't a lot of hope

> >>>>>finding anything with this test unless they know what they're

> >>>>>looking for.

> >>>>>

> >>>>>Here's my question. I'm now scheduled for a biopsy in a

couple

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> >>>of

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> >>>>>weeks. I haven't spoken to the doctor that is scheduled to

do

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> >>>the

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> >>>>>biopsy for quite a while (long story) - but he is not aware

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> >that

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> >>>>>

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> >>>the

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> >>>>>DNA test was done. Is it worth mentioning just before the

> >>>>>procedure - or pointless, as the mtDNA test which will most

> >>>>>

> >>>>>

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> >>>likely

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> >>>>>be done along with the biopsy will be looking for something

more

> >>>>>specific, as there may be some clues in the tissue.

> >>>>>

> >>>>>Any thoughts on this?

> >>>>>

> >>>>>Thanks,

> >>>>>Maggie

> >>>>>

> >>>>>

> >>>>>

> >>>>>Medical advice, information, opinions, data and statements

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> >>>contained herein

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> >>>>>are not necessarily those of the list moderators. The author

of

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reminded

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> >>>>>physicians regarding changes in their own treatment.

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> >>>>>Personal attacks are not permitted on the list and anyone who

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