Re: life expectancy for mito?

[Guest guest]

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I think the life expectancy for mito all depends on what organs are effected,

how badly, when the mito cocktail is started, how well the body responds to it.

We first discovered MELAS in 1996 when my sister was diagnosed after going into

a 4 day coma. She had done that in 1994 also and the family doctor in 1996

decided to look into it. She had a stroke and went into a two week coma even

before the blood tests came back from California. She did have the muscle

biopsy while in the coma. She was put on an experimental drug and responded to

it and was even cutting strawberries for supper on her birthday a month later.

Unfortunately she was started on the vitamins and DCA too late since they take

time to work.

On the other hand, my mother lived to 49. She was diagnosed with epilepsy in

her 30's and had regular periods of blackouts where she would fall.

My grandmother was 95 when she died. Both my son and I have mild symptoms and

are on the vitamin cocktail.

My aunts (my mothers sisters) one died at 56 and the other is 70.

So, I guess the progression of the disease and life expectancy is as varied as

the disease itself.

Janet Sample

--- Original Message -----

From: ohgminion

To:

Sent: Friday, March 18, 2005 3:19 PM

Subject: Re: ideas / ?

I don't think there's a general rule on life expectancy in mito

diseases. I remember one of the first stories I read about a MELAS

patient (when they first told me I appear to have MELAS) - she died

within 3 years of diagnosis. I've been ill for over 10 years, and I

had some of my most severe symptoms within the first three months

after I first noticed any symptoms (first symptom was double vision

in my case). Within those three months, I was blacking out

regularly, couldn't keep my head up after driving 10 minutes to work,

and was basically being told that I was either making up symptoms or

had a brain tumor. Six years later I found a doctor who knew it

could be mito disease. My daily symptoms now are mild enough that

most people don't know I'm ill, since they aren't at my house

watching me crawl up the stairs or have a stroke-like episode.

Me and my husband had been married about 4-1/2 years when I got

sick. He just seems to accept it, and takes care of me when I need

it, like when either I had to quit work or have him drive me to work -

he drove me to work every day even though it was 90 minutes out of

the way.

Weakness affects my daily life, but I don't feel weakness in itself

is a " risk factor " for shortened life span. I think even if one

doesn't have heart, kidney, or liver symptoms, getting to a

cardiologist and a GI specialist is an important way to " check " on

the status of long-term concerns. Unfortunately, I think most of us,

like people with other chronic illnesses, are at risk from other

illnesses or stresses causing a crisis.

Would you date more or less if you knew you had a decreased life

expectancy? I might date more, that is, if I was in the dating

pool...Also, how would you feel about dating someone with a shorter

life expectancy, would it matter to you?

P.S. How old is too old to date

Take care,

RH

> > >

> > >

> > > I have a question. It appears that many of you are in wheel

> > > chairs. Can you please tell me your experience of how long it

> took

> > > between starting to see weakness, and needing a wheel chair.

> > > I started noticing visable muscle size reduction two years ago,

> and

> > > get noticably weaker each year. I've just found a handicap

> > > accessable house I'm considering moving to before I'm weaker,

> and

> > > might need to consider a wheel chair.

> > > This information might help others on the list too. So the

more

> of

> > > you that respond the better idea we'll have of an average time

> > > frame. I think planning ahead helps to keep independence too.

> > > Thank you for your help.

> > > Kim

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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