Re: straight to the point question

[Guest guest]

I can't answer your question specifically, but no not all mitochondrial

myopathies are fatal.

[Guest guest]

Mitochondrial disease is not always progressive. Even though you may feel like

you have been given a terminal diagnosis, no one really knows. When my girls

were diagnosed, physicians typically diagnosed those most severely affected.

They thought it was always a severe disease. Over time physicians learned that

many individuals experience very slow progression over time. There are many

adults with a confirmed diagnosis who are in their 60’s, 70’s or 80’s. They

definitely have medical challenges but are NOT considered terminally ill. Some

individuals seem to improve rather than worsen or have disease courses that wax

and wane.

When Dr. Cohen evaluated my girls initially, he said his take home message

was, “Every morning when your daughters awake, remember there IS hope for

tomorrow”. We had been told by multiple physicians that would NOT

survive to her 5th birthday. Last week we celebrated her 16th J In both of our

daughters, the disease is definitely progressive, yet the physicians really

don’t know. Their bodies were uniquely and wonderfully made. With their

respective diagnoses, we have a limited understanding of why so many medical

issues keep appearing and why nothing plays by the textbook rules. We honestly

don’t know what the future holds or when something may or may not happen.

Several years ago presented Tom and I with her Last Will and Testament

along with the “plans” she wanted for her funeral. With all that was happening

in her body she felt the need to “get her affairs in order”. She continues to

live life to the fullest and is generally happy and vibrant. Having a

diagnosis allowed us to make treatment decisions and obtain supportive

services.

Mitochondrial disease is a life long, chronic disease or condition. It

presents many challenges or bumps along the way for some and far less so for

others. I have SLE (lupus), and in many ways the picture is similar. Lupus may

be a terminal illness for some and not for others. No one can say what the

future holds. I try to enjoy and appreciate life creating memories along the

way.

schumachervivian schumachervivian@...> wrote: is mitochondrial

encephalomyopathy complex I defect a fatal disease?

Are any or all of the mitochondrial myopathys fatal?

Thanks for the input.

Vivian

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[Guest guest]

Vivian

I guess we could say that living is fatal, so eventually we will all

die as the result of something. Adult onset is usually a slower

progression for most, but not all. Most with mito die of something

else, such as a heart attack, stroke, kidney failure, etc. These can

be the result of mito, but also other things such as high cholesterol

or blood pressure, etc.

I guess that doesn't answer the question other than to say that we are

all different. I do believe (only my opinion) that if we live healthy

lives with a positive outlook on things, that it will help everyone to

live longer, but can be especially important to those with mito.

laurie

> is mitochondrial encephalomyopathy complex I defect a fatal disease?

> Are any or all of the mitochondrial myopathys fatal?

>

> Thanks for the input.

>

> Vivian

>

>

>

>

>

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

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

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

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

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>

[Guest guest]

Not yet for me. I am relatively active with that dx by fresh muscle

biopsy. I was freaked when I read about MELAS cases, as I have many

MELAS symptoms, but the truth of this disease is everyone varies.

When I had a (wrong) myasthenia gravis (MG) dx, I was told that at

that point in time, life expectancy with MG had risen

to " indistinguishable from normal " , although of course with any

neuromuscular disease an exaceberation can change a decent course to a

dire one. Originally life expectancy was about 40 years old for a MG

dx.

It has been three years since the mito dx you noted was confirmed for

me, and almost 11 years with symptoms, which were worst in the first

few months.

Also, one reason I've tried to work full-time or go to school, even

when it is VERY inconvenient (couldn't drive, couldn't stay awake), is

to get no-questions-asked life insurance...

Live one day at a time.

Take care,

RH

>

> is mitochondrial encephalomyopathy complex I defect a fatal

disease?

> Are any or all of the mitochondrial myopathys fatal?

>

> Thanks for the input.

>

> Vivian

>