Re: puberty = symptoms---MITO TESTING

[Guest guest]

Huntington's is a VERY difficult issue, but I have a friend who has

breast cancer in many of her female relatives, and has decided not to

get mammograms or other testing to see if she is affected (she's over

50). Some people in that situation would go so far as removing both

breasts without any sign of cancer, because of strong genetics for

it, but she doesn't even want to know if she has cancer or not, as

opposed to looking for early detection methods. It's frustrating to

us as friends, but there seems to be nothing we can do about it.

A somewhat similar issue - we have a friend who is showing signs of

Alzheimer's, and I've been talking to her best friend about trying to

get her to see a doctor. Since I have similar symptoms due to high

ammonia (dementia, short term memory loss, confusion, thankfully

intermittently and fully resolving), and also know that there are

treatments to slow the onset of Alzheimer's, I am hoping she'll see a

neurologist soon. Finally, there was a bit of a breakthrough - she

works at a church, and takes the weekly collection to the bank. She

forgot how to get to the bank, so now her friends at the church are

concerned as well (she has no local family) and they will be talking

to her priest about getting her to see someone about her memory and

confusion issues.

I've already had a colonoscopy, when I was 30, because of

precancerous polyps my dad had and my mom had colon cancer and also

some mild symptoms. I do feel better knowing at least at that point

everything was okay. It's difficult enough to decide as an adult

what to do, but I'm not sure how I'll bring his medical issues up to

my son if/when it gets to that point.

BTW, I've gotten life insurance through my employer with no questions

asked, and there are also some associations that will offer life

insurance with no medical review. Certain group plans can't

discriminate based on health or age...

Take care,

RH

> > Caitlyn,

> > Welcome to the group. I am a and am 28. I

started

> having

> > symptoms when I was in my early teens and was diagnosed at age

> 18. You

> > are right about the heat taking a toll on the body. I know you

> want to

> > enjoy being outside, just remember to pace yourself. You have

> found a

> > great group of people here.

> > Smiles,

> > a

> >

> > On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 "

> > writes:

> > I am a new member. Just joined this group a couple of days ago

and

> > thought I should introduce myself. My name is Caitlin. I am 22

> years

> > old and from central PA. I have not officially been diagnosed

with

> a

> > mito disorder but one is suspected.

> > I have had cyclic vomiting syndrome since I was 4 and was

> diagnosed

> > with that when I was 8. There is a Dr in California, Dr. Boles

who

> > believes that cyclic vomiting syndrome (CVS) is mitochondrial

> related.

> > He has a study going on and I met the criteria for the first

phase

> of

> > the study. There are three phases of the study and they are

either

> on

> > the second or third, I can't remember. I had my COQ10 level

> checked and

> > it was below normal thus leading us to suspect even more that I

> have a

> > mito disorder.

> > I have always needed a lot of sleep. Even as a baby I slept a

lot.

> I am

> > tired pretty much all of the time. Heat makes me even more

tired.

> I try

> > to stay cool in the summer because I know if I do have mito

that

> > extreme temperatures are pretty bad but it is hard because I

love

> going

> > out in the summer. I've written a lot so I will go for now.

> > Caitlin

> >

> >

[Guest guest]

That makes a lot of sense. I don't want them tested. I'd like them

to make that decision as adults. I suppose when it becomes a big

issue is when the girls decide to have children.

I haven't even started any suppliments. They don't want to treat me

while trying to diagnose me.

Kim

> > Caitlyn,

> > Welcome to the group. I am a and am 28. I

started

> having

> > symptoms when I was in my early teens and was diagnosed at age

> 18. You

> > are right about the heat taking a toll on the body. I know

you

> want to

> > enjoy being outside, just remember to pace yourself. You have

> found a

> > great group of people here.

> > Smiles,

> > a

> >

> > On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 "

> > writes:

> > I am a new member. Just joined this group a couple of days ago

and

> > thought I should introduce myself. My name is Caitlin. I am 22

> years

> > old and from central PA. I have not officially been diagnosed

with

> a

> > mito disorder but one is suspected.

> > I have had cyclic vomiting syndrome since I was 4 and was

> diagnosed

> > with that when I was 8. There is a Dr in California, Dr. Boles

who

> > believes that cyclic vomiting syndrome (CVS) is mitochondrial

> related.

> > He has a study going on and I met the criteria for the first

phase

> of

> > the study. There are three phases of the study and they are

either

> on

> > the second or third, I can't remember. I had my COQ10 level

> checked and

> > it was below normal thus leading us to suspect even more that

I

> have a

> > mito disorder.

> > I have always needed a lot of sleep. Even as a baby I slept a

lot.

> I am

> > tired pretty much all of the time. Heat makes me even more

tired.

> I try

> > to stay cool in the summer because I know if I do have mito

that

> > extreme temperatures are pretty bad but it is hard because I

love

> going

> > out in the summer. I've written a lot so I will go for now.

> > Caitlin

> >

> >

[Guest guest]

I don't think there is a right answer or a wrong answer on this. If you have

confirmed family history, you could always ask about putting the kids on the

supplements. Our mito doc gave our daughter a dx of mito even though her

biopsy came back without any problems. The mito doc said it was either just

too soon or the wrong piece of muscle. With family history and certain labs

coming back the way they did, he gave her a dx. I got life insurance on my

daughter now and when she turns 21 she can just roll it over to an adult

policy without any medical questions/testing. The supplements hopefully slow

down the progression of the disease. Like I said, there is no right or wrong

answer, I just thought I would share my personal experience.

On Mon, 04 Jul 2005 13:07:19 -0000, klaga5 wrote

> That makes a lot of sense. I don't want them tested. I'd like them

> to make that decision as adults. I suppose when it becomes a big

> issue is when the girls decide to have children.

>

> I haven't even started any suppliments. They don't want to treat me

> while trying to diagnose me.

> Kim

>

>

> > > Caitlyn,

> > > Welcome to the group. I am a and am 28. I

> started

> > having

> > > symptoms when I was in my early teens and was diagnosed at age

> > 18. You

> > > are right about the heat taking a toll on the body. I know

> you

> > want to

> > > enjoy being outside, just remember to pace yourself. You have

> > found a

> > > great group of people here.

> > > Smiles,

> > > a

> > >

> > > On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 "

>

> > > writes:

> > > I am a new member. Just joined this group a couple of days ago

> and

> > > thought I should introduce myself. My name is Caitlin. I am 22

> > years

> > > old and from central PA. I have not officially been diagnosed

> with

> > a

> > > mito disorder but one is suspected.

> > > I have had cyclic vomiting syndrome since I was 4 and was

> > diagnosed

> > > with that when I was 8. There is a Dr in California, Dr. Boles

> who

> > > believes that cyclic vomiting syndrome (CVS) is mitochondrial

> > related.

> > > He has a study going on and I met the criteria for the first

> phase

> > of

> > > the study. There are three phases of the study and they are

> either

> > on

> > > the second or third, I can't remember. I had my COQ10 level

> > checked and

> > > it was below normal thus leading us to suspect even more that

> I

> > have a

> > > mito disorder.

> > > I have always needed a lot of sleep. Even as a baby I slept a

> lot.

> > I am

> > > tired pretty much all of the time. Heat makes me even more

> tired.

> > I try

> > > to stay cool in the summer because I know if I do have mito

> that

> > > extreme temperatures are pretty bad but it is hard because I

> love

> > going

> > > out in the summer. I've written a lot so I will go for now.

> > > Caitlin

> > >

> > >