RE: self-observation by patients

January 17, 2005

Steve,

Reading your post, I'm sitting here nodding and smiling and affirming. Yes,

yes, yes. I like your pipe dream. A Cliff's Notes Guide for the Undiagnosed.

Having been there--like you--I feel a visceral connection with the seekers

and have tremendous respect for the dogged determination and persistence it

takes to get answers. I also have great respect for patients as experts in

the experience of illness. Living with a disease, you can learn things about

it that can't be learned any other way. This kind of knowledge is invaluable

and I wish more physicians appreciated its worth.

Barbara

_____

From: Steve

Sent: Monday, January 17, 2005 7:21 PM

To:

Subject: self-observation by patients

* Barbara, I completely agree with your point, about how much us mito

patients

can contribute, with self-observations about diet and excercise.

I would add that, considering the vast delays and misdirections in getting

exact diagnoses, even SEEKERS (suspecters?) would be well served to know

some basics. For example, that carbs and proteins have certain

sub-categories, and are digested differently. Also, that light and heavy

exercise differ in the ways that you say, relating to storage and usage of

glucose vs. fatty acids. Early on, before a general mito diagnosis, or even

later, before getting some of the specifics, it appears that people with

these diseases must be their OWN fact-finders, often without much help from

their doctors, as they hunt online for clues about what might be causing

their not-yet-associated cluster of symptoms. I know a lot of this is all

over the internet and in medical journals etc., but what I'm getting at is a

very slimmed-down mito-oriented version of all these diet/excercise facts,

targeted towards helping individuals sort out WHAT they are looking for, in

their self-observation.

Maybe this is just a pipe dream, as I appreciate that mito disorders are

just one of many categories of ailments that are rare and poorly understood.

But I recall my own search for understanding and feel for the difficulty of

others just getting started on this path.

Steve D.

January 18, 2005

Steve

You wrote:

Maybe this is just a pipe dream, as I appreciate that mito disorders

are

just one of many categories of ailments that are rare and poorly

understood.

But I recall my own search for understanding and feel for the

difficulty of

others just getting started on this path.

As a Support Group Leader for the UMDF here in Florida I totally

agree with the last part of your message. I must get 5 calls per

month of newly dx patients or those seeking dx. My heart breaks for

those who are beginning this journey. I remember the day that Dr

Cohen called me at Ronal Mc House in Cleveland just hours after

's biopsy was preformed and told me that my son defintely had

a Mitochondrial Disease and he just needed further info from Dr

Hoppel to dx which ETC defect was deficient. About 2 weeks later he

called me on his day off with the full report. That day changed our

lives forever.

> Steve,

>

> Reading your post, I'm sitting here nodding and smiling and

affirming. Yes,

> yes, yes. I like your pipe dream. A Cliff's Notes Guide for the

Undiagnosed.

> Having been there--like you--I feel a visceral connection with the

seekers

> and have tremendous respect for the dogged determination and

persistence it

> takes to get answers. I also have great respect for patients as

experts in

> the experience of illness. Living with a disease, you can learn

things about

> it that can't be learned any other way. This kind of knowledge is

invaluable

> and I wish more physicians appreciated its worth.

>

> Barbara

>

> _____

>

> From: Steve [mailto:micro_choice@h...]

> Sent: Monday, January 17, 2005 7:21 PM

> To:

> Subject: self-observation by patients

>

> * Barbara, I completely agree with your point, about how much

us mito

> patients

> can contribute, with self-observations about diet and excercise.

>

> I would add that, considering the vast delays and misdirections in

getting

> exact diagnoses, even SEEKERS (suspecters?) would be well served to

know

> some basics. For example, that carbs and proteins have certain

> sub-categories, and are digested differently. Also, that light and

heavy

> exercise differ in the ways that you say, relating to storage and

usage of

> glucose vs. fatty acids. Early on, before a general mito diagnosis,

or even

> later, before getting some of the specifics, it appears that people

with

> these diseases must be their OWN fact-finders, often without much

help from

> their doctors, as they hunt online for clues about what might be

causing

> their not-yet-associated cluster of symptoms. I know a lot of this

is all

> over the internet and in medical journals etc., but what I'm

getting at is a

> very slimmed-down mito-oriented version of all these diet/excercise

facts,

> targeted towards helping individuals sort out WHAT they are looking

for, in

> their self-observation.

>

> Maybe this is just a pipe dream, as I appreciate that mito

disorders are

> just one of many categories of ailments that are rare and poorly

understood.

> But I recall my own search for understanding and feel for the

difficulty of

> others just getting started on this path.

>

> Steve D.

>

January 18, 2005