In fact, it was Mitochondrial Disease

[Guest guest]

In a message dated 4/28/2002 7:49:47 PM Central Daylight Time,

zelenko_vsc@... writes:

> we were immediately put on the Mitochondrial Disease path, a group of

> diseases which the medical community is only just now beginning to discover

> and which is frequently and dangerously misdiagnosed (such as CFS,

> Epilepsy, SIDS, unexplained developmental delays, etc.)... because of our

> experience, and the devastation it has caused so many around us who have

> Mito, we think it is important to share this with you. We hope it can be

> helpful to you, your family, friends and/or doctors.

>

This is very intriguing to me because I was just diagnosed with fibromyalgia

a couple of weeks ago but I also have a son who is 'moderately to severely'

autistic...with no known cause (alas we now have TWO disorders in the family

that many people know nothing about) and I have been wondering if there could

be any kind of a connection between the two disorders...even if it's a remote

gene problem or whatever. I have been reading several books about FM and

every once in awhile I run across something that makes me think about a

connection to autism. Can't remember any specifics (surprise surprise...I

definitely have some cognitive dysfunction going on) but remember it clicking

somewhere in my head. I will definitely have to look up some info on this

Mitochondrial Disease.

Thanks for the info

Jen in Iowa

[Guest guest]

Hello, we are new and would like to share our experience with you. For many

years doctors dx our symptoms as CFS or Fibromyalgia, or [laughing] BAM, Being a

Mother. When my daughter was born, we were immediately put on the Mitochondrial

Disease path, a group of diseases which the medical community is only just now

beginning to discover and which is frequently and dangerously misdiagnosed (such

as CFS, Epilepsy, SIDS, unexplained developmental delays, etc.)... because of

our experience, and the devastation it has caused so many around us who have

Mito, we think it is important to share this with you. We hope it can be

helpful to you, your family, friends and/or doctors.

Some of you may remember hearing about 11 year old Mattie Stepanek, who has a

form of MD, Mitochondrial Myopathy, and has written NY Times bestseller " Hope

Through Heartsongs " . He has appeared most recently on Oprah, Larry King Live and

CNN.

I would like to welcome opening any discussion concerning mitochondrial

dysfunction, in adults or children. For more information about " Mito " ,

www.umdf.org, www.mitoresearch.org, www.nih.gov/sigs/mito, www.mdausa.org,

www.mitosoc.org. I included some info below for you all... thanks... I hope to

" hear " from you soon --

Mito Facts…

Of the 4 million children born each year in the U.S., 4000+ develop

mitochondrial diseases.

In the United States, more than 50 million adults suffer from diseases in

which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found

in diseases as diverse as cancer, infertility, autism, epilepsy, diabetes, heart

diseases, blindness, deafness, kidney disease, liver disease, stroke, migraine,

SIDS, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also

involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer

dementia.

Mitochondrial diseases can affect any organ in the body and at any age.

Mitochondrial diseases are severely debilitating, often fatal and

characteristically complex in nature. Some, however, present only mildly. They

are inherited through the mother, but can at times be inherited from either

parent. They can also be sporadic or induced by the environment.

Many mitochondrial diseases are so new that they have not yet been mentioned

in medical textbooks.

To date, there is no cure for mitochondrial diseases…

FOR MORE INFORMATION ON THE

5th INTERNATIONAL UMDF SYMPOSIUM ON MITOCHONDRIAL DISEASES (June 6-9, 2002)

OR

ON MITO GENERALLY, PLEASE CONTACT :

The Mitochondrial Research Society www.mitoresearch.org

The United Mitochondrial Disease Foundation www.umdf.org

The Muscular Dystrophy Association www.mdausa.org (look under Mitochondrial

Myopathies)

The Mitochondrial Medicine Society www.mitosoc.org

The Mitochondrial Interest Group, National Institutes of Health

www.nih.gov/sigs/mito

---------------------------------

[Guest guest]

I have one question. How can a disease which by definition is inherited

from the mother (that's what mitochondrial means), also come from the father

or the environment?

They are inherited through the mother, but can at times be inherited

from either parent. They can also be sporadic or induced by the environment.

[Guest guest]

I have one question. How can a disease which by definition is inherited

from the mother (that's what mitochondrial means), also come from the father

or the environment?

They are inherited through the mother, but can at times be inherited

from either parent. They can also be sporadic or induced by the environment.

Or, in my case...head trauma...Face it folks...they don't really know!

Missy

[Guest guest]

I wondered that myself. As someone who is medically phobic and

already dealing with something new and painful, I also didn't enjoy

being exposed to that kind of information, however helpful it was

intended to be. I spent a long and agonizing time having terrible

diseases excluded as a diagnosis, where my anxiety got bad enough

for my doctor to prescribe valium. Sorry, I just found this

upsetting.

Shandi

> I have one question. How can a disease which by definition is

inherited

> from the mother (that's what mitochondrial means), also come from

the father

> or the environment?

> They are inherited through the mother, but can at times be

inherited

> from either parent. They can also be sporadic or induced by the

environment.

>

>

[Guest guest]

Missy,

It is the nature of genetics. Normally if it is inherited from the mother but

and not from the father. But if you have 2 genes for it then it could be

inherited from both. As a former scientist I understand completely what was

said in regard to this.

Re: In fact, it was Mitochondrial Disease

I have one question. How can a disease which by definition is inherited

from the mother (that's what mitochondrial means), also come from the father

or the environment?

They are inherited through the mother, but can at times be inherited

from either parent. They can also be sporadic or induced by the environment.

Or, in my case...head trauma...Face it folks...they don't really know!

Missy

[Guest guest]

Shandi,

Sorry this is upsetting to you but I find the information useful and would be

very upset if it could not be presented. I came to this forum for support and

information. All information is worthwhile. If you can't deal with it only

read the support messages and not the information ones.

Re: In fact, it was Mitochondrial Disease

I wondered that myself. As someone who is medically phobic and

already dealing with something new and painful, I also didn't enjoy

being exposed to that kind of information, however helpful it was

intended to be. I spent a long and agonizing time having terrible

diseases excluded as a diagnosis, where my anxiety got bad enough

for my doctor to prescribe valium. Sorry, I just found this

upsetting.

Shandi

> I have one question. How can a disease which by definition is

inherited

> from the mother (that's what mitochondrial means), also come from

the father

> or the environment?

> They are inherited through the mother, but can at times be

inherited

> from either parent. They can also be sporadic or induced by the

environment.

>

>

[Guest guest]

I just wanted to apologize to everyone....it doesn't take much to

upset me anymore...I'm having my worst flare of fatigue and pain

ever, and I am in chronic pain from my ovarian cyst that won't be

removed til June. Lately I tend to crumble if I burn something in

the oven due to forgetfulness or because I have to re-read the same

page of a book three times before " I get it " I am just too sensitive

anymore, so I'll take a break from the club and not inappropriately

subject others to my nerves. Hey maybe the higher doses of zoloft

will kick in soon :-) You've all been great.

Shandi

> > I have one question. How can a disease which by definition is

> inherited

> > from the mother (that's what mitochondrial means), also come

from

> the father

> > or the environment?

> > They are inherited through the mother, but can at times

be

> inherited

> > from either parent. They can also be sporadic or induced by

the

> environment.

> >

> >

>

>

>

[Guest guest]

Shandi~

I'm so sorry your feeling at your worst! I do hope you start feeling better. The

day seem's to drag on forever when you feel bad. I have had plenty of those

days. I always feel exausted, even though I've slept over 10 hours. But what are

you gonna do? For me just keep on doing what I am doing.

Tomorrow my husband leaves on a buisness trip. I know he'll be home on Thursday,

but it seems like forever. He dosn't travel very often so when he does have to

travel I worry and the stress seems to flair up every disorder in my body. Well,

I just wanted to let you know I'm thinking of you Shandi. Take care of

yourself!!

---------------------------------

[Guest guest]

so I'll take a break from the club and not inappropriately

> subject others to my nerves. Hey maybe the higher doses of zoloft

> will kick in soon :-) You've all been great.

>

> Shandi

>

>

Shandi,

Don't disappear on us! You didn't do anything wrong or say anything

inappropriate. Everyone understands how down and frustrated and

anxious you're feeling. Stick around ok? I'm here for you.