Re: Not sure how to ask this, but going to try my best.

[Guest guest]

--- issnowwhite54 issnowwhite54@...> wrote:

I

> wonder on an overall average,will it take to wind up

> with a TPN or J

> tube or what ever.I hope I explained this ok to you,

> but I am

> worried and wondering about many things, and the

> things yet to come.

> If you could help in anyway to answer questions

> along th lines of

> this e mail I would appreciate it.

There is no way anyone can answer this for you. Not

everyone ends up with tubes. Many mito patients are

morbidly obese. Many are way too thin. A great number

of the obese mito patients used to have problems

keeping the weight on. There is no real rhyme or

reason.

I'm 42 and work full time as a nurse. I can no longer

do the physical work they do in hospitals but I can

work full time plus in home health. I feel like crap

and am always tired but I am the sole support for my

family. My mom has had very mild symptoms for years

and years. She's 68 and retired. My son is 17 and has

become progressively more disabled. He has reasoning

difficulites. He's disabled by pain and fatigue. He'll

be lucky to graduate from high school. He's not been

able to attend school since 8th grade

Every one is different. Even those with the same exact

defect will most likely have different presentations.

There is no way that anyone can say that you'll have

any specific problem at any time.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

[Guest guest]

Irene

I have to agree with - just can't predict. I've used a

scooter/powerchair for 12-13 years, but can still walk short distances

around the house. Some people have severe GI issues and others don't

have any. My son actually showed improvement in many areas from when

he was a child. Taking care of yourself the best you can is the key to

dealing.

laurie

> I have read many e mails regarding mito. I have been with this group

> and adultmitos and umdf group etc. for about a month. I know this

> disease attacks people differently. But, alot of you are worse off

> than I am,and I truly feel for you all. I pray for you all also. I

> have been going down hill in the health department for at least 5 or

> so years. I have now many ailments, and been diagnosed only recently

> with a biopsy and blood work up to find out I have MELAS/Mito. I

> don't know how long it took for some of you to get in the bad way

> you are now. But on the overall look at I would wonder if you could

> give me an idea of the time span. Then I read e mails that say some

> of you got drastically worse, rather very quickly. A drastic

> situation from being limited a little one day, to waking up the next

> day and not being able to turn over in bed. This is all very

> frightning. I myself can see that sometimes this disease can move

> fast,It has effected every organ in my body to some degree. I went

> from legs to arms, to neck, etc. I am limited now, and the fatigue

> had gotten really bad at times. But the head games this disease

> plays, and being I notice the dementia getting steadly worse, I

> wonder on an overall average,will it take to wind up with a TPN or J

> tube or what ever.I hope I explained this ok to you, but I am

> worried and wondering about many things, and the things yet to come.

> If you could help in anyway to answer questions along th lines of

> this e mail I would appreciate it.

>

>

>

>

>

>

> 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]

Everyone is different, even in the same family with the same disease. My

grandmother on my mothers side (this is maternal for us) lived to be 95. She

had cateracts and diabetes and that is all. She had dementia but this was not

until she turned 80.

My sister was the first in our family to be diagnosed with MELAS in 1996. She

had gone into a 4 day coma in 1994 and then again in 1996. She then went into

another 2 week coma and later had a relapse and died. She was 33. Up till then

she was very athletic with no hint of a problem.

We suspect my mother also had it as she died of what was called an epileptic

seizure in 1988. She had been sick most of her life after age 30. She was 49.

I am now 43 and have mild symptoms--blood sugar that goes up with physical

exercise, sometimes memory problems, fatique. I work full time but currently

have a temporary postion. I cannot stand on my feet for more than 5 minutes

without walking, moving, etc or I get sick to my stomach. Thus I have an office

job. My symptoms have been pretty much the same for the last 5 years. The

carnitor and qgel really help me.

My 13 yr old son has mainly constipation and dysmobility issues. He has some

attention and behavorial issues but they are mild and generally show up when he

is tired. He has a problem of going into a deep, almost coma like sleep

whenever he gets a bad cold or virus. He needs to sleep almost 24 hrs to get

rid of it. My son's dsymobility is under control with the vitamin cocktail, we

have had no trips to the hospital in 3 years. But, that does not mean that a

new problem will not surface with him getting into his teen years.

So, everyone is different. I believe (no doctor here) that taking the vitamin

cocktail will help ward off problems but vitamins need to be taken consistently

for a period of time. In my sisters case she was diagnosed only 6 months before

her death. For her it was a case of too little help too late.

Janet Sample

Not sure how to ask this, but going to try my best.

I have read many e mails regarding mito. I have been with this group

and adultmitos and umdf group etc. for about a month. I know this

disease attacks people differently. But, alot of you are worse off

than I am,and I truly feel for you all. I pray for you all also. I

have been going down hill in the health department for at least 5 or

so years. I have now many ailments, and been diagnosed only recently

with a biopsy and blood work up to find out I have MELAS/Mito. I

don't know how long it took for some of you to get in the bad way

you are now. But on the overall look at I would wonder if you could

give me an idea of the time span. Then I read e mails that say some

of you got drastically worse, rather very quickly. A drastic

situation from being limited a little one day, to waking up the next

day and not being able to turn over in bed. This is all very

frightning. I myself can see that sometimes this disease can move

fast,It has effected every organ in my body to some degree. I went

from legs to arms, to neck, etc. I am limited now, and the fatigue

had gotten really bad at times. But the head games this disease

plays, and being I notice the dementia getting steadly worse, I

wonder on an overall average,will it take to wind up with a TPN or J

tube or what ever.I hope I explained this ok to you, but I am

worried and wondering about many things, and the things yet to come.

If you could help in anyway to answer questions along th lines of

this e mail I would appreciate it.

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.