Re: my mom and other family with possible mito

[Guest guest]

Adrienne

and I have been diagnosed via muscle biopsy, but our mother, my son

and her daughter have all been diagnosed by EMG, blood work and symptoms and

the apparent maternal transmission. We are sure our brothers have it, but

they are not yet ready to have it confirmed.

I'm sure not all doctors would feel comfortable doing things this way, but

it has been the appropriate thing for our family.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Thu, 27 May 2004 20:23:29 EDT

> To:

> Subject: my mom and other family with possible mito

>

> Hi guys,

> I just wanted to ask this- once one family member gets the mito dx- what

> about others with symptoms? I am the most affected in my family of course-

> that is

> how I was the first to be diagnosed. But now that I've got a clear mito dx,

> what about the rest of my family? My mom seems to be having more and more

> health concerns- she's 57 now and has been pretty healthy other than obesity

> and

> probs with hypoglycemia alot of her life. Well, the past 3-4 yrs shes started

> having probs with fatigue, leg pain, and GI disorders. I also think she might

> have dysautonomia like me due to low BP, some of her temp regulation probs and

> excessive sweating. The past few months she has started to have more symptoms-

> fatigue worsening, more muscle pain, dizziness, significant weight loss (15

> lbs in the past 2 wks), nausea/appitite loss, new headaches and a few other

> things. Of course some of her drs blame alot of these symptoms on her being

> obese.

> I know that it might be affecting the symptoms but not the cause. They also

> seem to be happy she's losing weight. She decided to go on the south beach

> diet

> now since she's not hungry to start with and I think that the high fat low

> carb diet is making her symptoms worse. Since I was diagnosed with mito now

> and

> I've told her I want her checked, she seems to not wanna think about it. She

> does want to believe my brother's problems are due to it though (hes got alot

> of behavioral issues- ODD, ADHD and suspected bipolar and he also has a hard

> time with infections- causing headaches and excessive fatigue/pain, etc and

> with

> mild cyclic vomiting.) I've got other family members (my aunts, cousins, etc)

> that also have mild symptoms- mainly dysautonomia symptoms, GI disorders and

> developmental/learning disabilites. I just dont know what should be done- I

> guess this is a question to ask my geneticist next week but I thought I would

> ask how those of you with other family with mito- how did they get diagnosed?

> I

> guess if its a known mutation through blood its pretty easy but since they

> havent found my mutation yet but suspect a MELAS variant- guess its just wait

> and

> see. There is no other way other than a muscle biopsy for them right? Just

> thought I would ask- thank you for any responses.

> take care,

> Adrienne

>

>

>

[Guest guest]

Adrienne,

Other members may just need a blood test.

My sister went into two 4 day coma's in 2 years and the second time her new

doctor who happened to be there friend from where they just moved started

searching. That was in 1996. My mother died in 1988 from an epileptic

seizure but we now believe it was melas.

Because she had the blood test and a muscle biopsy and they knew she had

MELAS, when I started having mild symptoms in 1997 I only had to have a

blood test.

When my son started to have constipation problems and a year before that

headaches and some behavioral problems, in 2002 he had the blood test done

also.

I do not know if this is the normal way to do it, but that is the way Dr

Tick from Milwaukee did it.

Janet Sample

my mom and other family with possible mito

> Hi guys,

> I just wanted to ask this- once one family member gets the mito dx- what

> about others with symptoms? I am the most affected in my family of course-

that is

> how I was the first to be diagnosed. But now that I've got a clear mito

dx,

> what about the rest of my family? My mom seems to be having more and more

> health concerns- she's 57 now and has been pretty healthy other than

obesity and

> probs with hypoglycemia alot of her life. Well, the past 3-4 yrs shes

started

> having probs with fatigue, leg pain, and GI disorders. I also think she

might

> have dysautonomia like me due to low BP, some of her temp regulation probs

and

> excessive sweating. The past few months she has started to have more

symptoms-

> fatigue worsening, more muscle pain, dizziness, significant weight loss

(15

> lbs in the past 2 wks), nausea/appitite loss, new headaches and a few

other

> things. Of course some of her drs blame alot of these symptoms on her

being obese.

> I know that it might be affecting the symptoms but not the cause. They

also

> seem to be happy she's losing weight. She decided to go on the south beach

diet

> now since she's not hungry to start with and I think that the high fat low

> carb diet is making her symptoms worse. Since I was diagnosed with mito

now and

> I've told her I want her checked, she seems to not wanna think about it.

She

> does want to believe my brother's problems are due to it though (hes got

alot

> of behavioral issues- ODD, ADHD and suspected bipolar and he also has a

hard

> time with infections- causing headaches and excessive fatigue/pain, etc

and with

> mild cyclic vomiting.) I've got other family members (my aunts, cousins,

etc)

> that also have mild symptoms- mainly dysautonomia symptoms, GI disorders

and

> developmental/learning disabilites. I just dont know what should be done-

I

> guess this is a question to ask my geneticist next week but I thought I

would

> ask how those of you with other family with mito- how did they get

diagnosed? I

> guess if its a known mutation through blood its pretty easy but since they

> havent found my mutation yet but suspect a MELAS variant- guess its just

wait and

> see. There is no other way other than a muscle biopsy for them right? Just

> thought I would ask- thank you for any responses.

> take care,

> Adrienne

>

>

>

[Guest guest]

Hello Janet,

I'm so sorry to here about your mothers death. I have MERRF disorder and its not

easy to deal with I think that MELAS is something pretty similar? We all hope to

be better and I hope that this way of communicating can help us in any possible

way!

I've been on EPIVAL & KEPPRA and its helping me a lot for seizures but I hope my

myoclonus (jerking) will improve, I started CoQ10 & L Carnitine a few days ago.

Best wishes,

Sal

my mom and other family with possible mito

> Hi guys,

> I just wanted to ask this- once one family member gets the mito dx- what

> about others with symptoms? I am the most affected in my family of course-

that is

> how I was the first to be diagnosed. But now that I've got a clear mito

dx,

> what about the rest of my family? My mom seems to be having more and more

> health concerns- she's 57 now and has been pretty healthy other than

obesity and

> probs with hypoglycemia alot of her life. Well, the past 3-4 yrs shes

started

> having probs with fatigue, leg pain, and GI disorders. I also think she

might

> have dysautonomia like me due to low BP, some of her temp regulation probs

and

> excessive sweating. The past few months she has started to have more

symptoms-

> fatigue worsening, more muscle pain, dizziness, significant weight loss

(15

> lbs in the past 2 wks), nausea/appitite loss, new headaches and a few

other

> things. Of course some of her drs blame alot of these symptoms on her

being obese.

> I know that it might be affecting the symptoms but not the cause. They

also

> seem to be happy she's losing weight. She decided to go on the south beach

diet

> now since she's not hungry to start with and I think that the high fat low

> carb diet is making her symptoms worse. Since I was diagnosed with mito

now and

> I've told her I want her checked, she seems to not wanna think about it.

She

> does want to believe my brother's problems are due to it though (hes got

alot

> of behavioral issues- ODD, ADHD and suspected bipolar and he also has a

hard

> time with infections- causing headaches and excessive fatigue/pain, etc

and with

> mild cyclic vomiting.) I've got other family members (my aunts, cousins,

etc)

> that also have mild symptoms- mainly dysautonomia symptoms, GI disorders

and

> developmental/learning disabilites. I just dont know what should be done-

I

> guess this is a question to ask my geneticist next week but I thought I

would

> ask how those of you with other family with mito- how did they get

diagnosed? I

> guess if its a known mutation through blood its pretty easy but since they

> havent found my mutation yet but suspect a MELAS variant- guess its just

wait and

> see. There is no other way other than a muscle biopsy for them right? Just

> thought I would ask- thank you for any responses.

> take care,

> Adrienne

>

>

>

[Guest guest]

Sal,

From what I hear MERFF and MELAS are similiar. My mother always had the kind of

seizures where she would just black out and fall. She was on some anti seizure

medicine but I do not know which. The last time her right arm was actually

shaking--from what happened to my sister it was also probably muscle weakness.

Anyway, I have " evidence " of seizures from an MRI spectopsy in 1997. I cannot

remember fainting or blacking out 3 times in my life as told by other people. I

am sure there are alot of other times I did it and do not know about it.

My 11 year old son who was diagnosed last year sometimes we will catch him in

what I believe are absence seizures where he will sit and stare for a few

minutes to seconds.

My sister never really had any seizures either. in 1994 she had the kind of

seizure where you are thrashing around. Then she went into a 4 day coma, came

out of it no apparant reason except they said she may have had a virus. She was

fine for two years and then almost 2 years to the day she did it again. Came

out of it again fine, took the delayed vacation to Florida, came back, had a

stroke. Recovered except difficulty walking and a some wrong words spoken.

Then she went into 10 hours of seizures they could not control--SHE WAS ON ANTI

SEIZURE medication. Anyway, that is when she went into the two week coma.

Again came out pretty good except for walking. But, the vitamin cocktail

started in May did not have enough time to work and she died in October.

I might mention here that is when they did the muscle biopsy and she was given

the experimental drug DCA. It did lower her lactic acid. It is now still

available but now you have to pay for it. It is like a last resort though

because there are some complications. There is a patient--I don't know what

age, in Milwaukee that is currently on it.

Anyway, the carnitor and Qgel take awhile to work. The qgel does get into your

system faster than regular CoQ10 but vitamins in general take awhile to build up

in your body.

Well, have to go--talk to you more later.

Janet Sample

my mom and other family with possible mito

>

>

> > Hi guys,

> > I just wanted to ask this- once one family member gets the mito dx- what

> > about others with symptoms? I am the most affected in my family of course-

> that is

> > how I was the first to be diagnosed. But now that I've got a clear mito

> dx,

> > what about the rest of my family? My mom seems to be having more and more

> > health concerns- she's 57 now and has been pretty healthy other than

> obesity and

> > probs with hypoglycemia alot of her life. Well, the past 3-4 yrs shes

> started

> > having probs with fatigue, leg pain, and GI disorders. I also think she

> might

> > have dysautonomia like me due to low BP, some of her temp regulation probs

> and

> > excessive sweating. The past few months she has started to have more

> symptoms-

> > fatigue worsening, more muscle pain, dizziness, significant weight loss

> (15

> > lbs in the past 2 wks), nausea/appitite loss, new headaches and a few

> other

> > things. Of course some of her drs blame alot of these symptoms on her

> being obese.

> > I know that it might be affecting the symptoms but not the cause. They

> also

> > seem to be happy she's losing weight. She decided to go on the south beach

> diet

> > now since she's not hungry to start with and I think that the high fat low

> > carb diet is making her symptoms worse. Since I was diagnosed with mito

> now and

> > I've told her I want her checked, she seems to not wanna think about it.

> She

> > does want to believe my brother's problems are due to it though (hes got

> alot

> > of behavioral issues- ODD, ADHD and suspected bipolar and he also has a

> hard

> > time with infections- causing headaches and excessive fatigue/pain, etc

> and with

> > mild cyclic vomiting.) I've got other family members (my aunts, cousins,

> etc)

> > that also have mild symptoms- mainly dysautonomia symptoms, GI disorders

> and

> > developmental/learning disabilites. I just dont know what should be done-

> I

> > guess this is a question to ask my geneticist next week but I thought I

> would

> > ask how those of you with other family with mito- how did they get

> diagnosed? I

> > guess if its a known mutation through blood its pretty easy but since they

> > havent found my mutation yet but suspect a MELAS variant- guess its just

> wait and

> > see. There is no other way other than a muscle biopsy for them right? Just

> > thought I would ask- thank you for any responses.

> > take care,

> > Adrienne

> >

> >

> >

[Guest guest]

Janet thanks for writing again.. So sorry about your sister it really touched me

its sad to hear about those things!

If I'm not mistaking your mother had Melas I guess its the same as Merrf cause I

did black out and felt a few times and its very scary. lately I've been having

problems with my speech (speaking) having a long conversation with someone

becomes more and more difficult as long as I keep it short I'm fine.

But even if my speech, walking long distances, hearing problems and tremor as

well as some jerks happens once in a while.. They are all milled and consider

myself lucky. When I first became suspicious about my health I was about 19 at

the time, the only thing that happened was a brief Jerk of the head while

playing video games in a casino.

Then I had my first seizure at the age of 21 on my bed while watching wrestling

on TV. I remember having uncontrollable head jerks that lead to my seizure to

later be told that I was epileptic? I was given 50mg of Epival daily. A year or

so later I was feeling tired lack of energy and still had some jerks it had to

be more than just epilepsy?

We soon found out it was in the family.. My Grandmother had some bad mito and

she gave some to one of his son he died in 1983 my uncle was just 36 my mother

got some too but she's ok I have two sisters that are fine but I was the one who

got the bad mito from my mom.

One thing I know is throughout these years I made a big mistake by not listening

too my body doing things I couldn't do any more maybe because I didn't accept my

illness and had to increase my dosage.!! I taught (and also my doctor) that I

was feeling worse!! Too much drugs aren't good and will kill you in the long

run.. I could of taken much lesser than what I'm taking now and complete the

diet with some vitamins.

Talk to you later,

Janet

my mom and other family with possible mito

>

>

> > Hi guys,

> > I just wanted to ask this- once one family member gets the mito dx- what

> > about others with symptoms? I am the most affected in my family of

course-

> that is

> > how I was the first to be diagnosed. But now that I've got a clear mito

> dx,

> > what about the rest of my family? My mom seems to be having more and

more

> > health concerns- she's 57 now and has been pretty healthy other than

> obesity and

> > probs with hypoglycemia alot of her life. Well, the past 3-4 yrs shes

> started

> > having probs with fatigue, leg pain, and GI disorders. I also think she

> might

> > have dysautonomia like me due to low BP, some of her temp regulation

probs

> and

> > excessive sweating. The past few months she has started to have more

> symptoms-

> > fatigue worsening, more muscle pain, dizziness, significant weight loss

> (15

> > lbs in the past 2 wks), nausea/appitite loss, new headaches and a few

> other

> > things. Of course some of her drs blame alot of these symptoms on her

> being obese.

> > I know that it might be affecting the symptoms but not the cause. They

> also

> > seem to be happy she's losing weight. She decided to go on the south

beach

> diet

> > now since she's not hungry to start with and I think that the high fat

low

> > carb diet is making her symptoms worse. Since I was diagnosed with mito

> now and

> > I've told her I want her checked, she seems to not wanna think about it.

> She

> > does want to believe my brother's problems are due to it though (hes got

> alot

> > of behavioral issues- ODD, ADHD and suspected bipolar and he also has a

> hard

> > time with infections- causing headaches and excessive fatigue/pain, etc

> and with

> > mild cyclic vomiting.) I've got other family members (my aunts, cousins,

> etc)

> > that also have mild symptoms- mainly dysautonomia symptoms, GI disorders

> and

> > developmental/learning disabilites. I just dont know what should be

done-

> I

> > guess this is a question to ask my geneticist next week but I thought I

> would

> > ask how those of you with other family with mito- how did they get

> diagnosed? I

> > guess if its a known mutation through blood its pretty easy but since

they

> > havent found my mutation yet but suspect a MELAS variant- guess its just

> wait and

> > see. There is no other way other than a muscle biopsy for them right?

Just

> > thought I would ask- thank you for any responses.

> > take care,

> > Adrienne

> >

> >

> >

[Guest guest]

Sal,

Sounds like you found out early about your problems. I really have not had

any " real " problems until about 10 years ago. In 1997 when I went to get

tested I went because I had my whole left side go numb for about 30 seconds

to 1 minute. I was at my desk at work at the time and remembered about DR

Tick telling us some of the signs of MELAS such as the numbness , hearing

loss, weight loss, exercise intolerance.

I am 42 now and really have the exercise intolerance. If I walk very far or

do too much strenuous activity my blood sugar goes way up and I get dizzy

and lightheaded and my whole body just feels like mush.

I have always had the symptoms, just never realized what they were and they

were milder. I have always had a slight hearing loss as did my mother and

aunt. My aunt was an insulin diabetic like me at around 35. She died at

the age of 55 a few years ago. Never saw her much but she was about 130

pounds, five ft 3 or so like me. My mother and sister were 5 ft, 105 lbs or

so. They both weighed 89 lbs when they died.

I also have trouble finding the correct words and will call things the wrong

name when I am very tired. This is another symptom of MELAS I was told by

the doc and from others is a symptom of MITO in general.

Over all, besides a different gene mutation I guess MERFF and MELAS are

basically the same. I do not get the jerks but then I only have certain

symptoms.

I was told by Dr Tick that MELAS can cause many problems and mimic many

diseases. I am lucky not to have any breathing or heart problems. I just

have the numbness of the top of my left foot, diabetes that blood sugar goes

up when I exercise--unlike a normal diabetic, very hard to

control--sometimes feet are numb and tingling. hearing loss, and exercise

intolerance.

As far as the " bad " mito--my brother now 37 has problems with being tired

all the time and his legs are sore. I think he is a seizure waiting to

happen as he is 5 ft 3 and 110 lbs soaking wet. He never has been able to

gain weight. My sister was 33 and mother 49 when they died.

My grandmother lived to be 95, my other aunt is 70, my uncle is like 72.

It depends I guess alot on what you got at birth. But the vitamin cocktail

can help improve our chances now that we know about it.

Janet

my mom and other family with possible mito

> >

> >

> > > Hi guys,

> > > I just wanted to ask this- once one family member gets the mito

dx- what

> > > about others with symptoms? I am the most affected in my family of

course-

> > that is

> > > how I was the first to be diagnosed. But now that I've got a clear

mito

> > dx,

> > > what about the rest of my family? My mom seems to be having more

and more

> > > health concerns- she's 57 now and has been pretty healthy other

than

> > obesity and

> > > probs with hypoglycemia alot of her life. Well, the past 3-4 yrs

shes

> > started

> > > having probs with fatigue, leg pain, and GI disorders. I also

think she

> > might

> > > have dysautonomia like me due to low BP, some of her temp

regulation probs

> > and

> > > excessive sweating. The past few months she has started to have

more

> > symptoms-

> > > fatigue worsening, more muscle pain, dizziness, significant weight

loss

> > (15

> > > lbs in the past 2 wks), nausea/appitite loss, new headaches and a

few

> > other

> > > things. Of course some of her drs blame alot of these symptoms on

her

> > being obese.

> > > I know that it might be affecting the symptoms but not the cause.

They

> > also

> > > seem to be happy she's losing weight. She decided to go on the

south beach

> > diet

> > > now since she's not hungry to start with and I think that the high

fat low

> > > carb diet is making her symptoms worse. Since I was diagnosed with

mito

> > now and

> > > I've told her I want her checked, she seems to not wanna think

about it.

> > She

> > > does want to believe my brother's problems are due to it though

(hes got

> > alot

> > > of behavioral issues- ODD, ADHD and suspected bipolar and he also

has a

> > hard

> > > time with infections- causing headaches and excessive

fatigue/pain, etc

> > and with

> > > mild cyclic vomiting.) I've got other family members (my aunts,

cousins,

> > etc)

> > > that also have mild symptoms- mainly dysautonomia symptoms, GI

disorders

> > and

> > > developmental/learning disabilites. I just dont know what should

be done-

> > I

> > > guess this is a question to ask my geneticist next week but I

thought I

> > would

> > > ask how those of you with other family with mito- how did they get

> > diagnosed? I

> > > guess if its a known mutation through blood its pretty easy but

since they

> > > havent found my mutation yet but suspect a MELAS variant- guess

its just

> > wait and

> > > see. There is no other way other than a muscle biopsy for them

right? Just

> > > thought I would ask- thank you for any responses.

> > > take care,

> > > Adrienne

> > >

> > >

> > >

[Guest guest]

Hi Janet always nice talking to you! Yea I found out pretty early about my

problems.. Its amazing how this mito works just to tell you my grandmother is in

her late 70s and she's as strong as a bull..

She had 9 children and only one was affected and died! All my other uncles ants

and cousins are fine of course except for me since my mother gave me a lot of

bad mito.

I guess having 10 or 15% of bad mito in your cells is no big deal. So I think

some people in my family have some bad mito but not enough to be affected!!

Sal

my mom and other family with possible mito

> >

> >

> > > Hi guys,

> > > I just wanted to ask this- once one family member gets the mito

dx- what

> > > about others with symptoms? I am the most affected in my family of

course-

> > that is

> > > how I was the first to be diagnosed. But now that I've got a clear

mito

> > dx,

> > > what about the rest of my family? My mom seems to be having more

and more

> > > health concerns- she's 57 now and has been pretty healthy other

than

> > obesity and

> > > probs with hypoglycemia alot of her life. Well, the past 3-4 yrs

shes

> > started

> > > having probs with fatigue, leg pain, and GI disorders. I also

think she

> > might

> > > have dysautonomia like me due to low BP, some of her temp

regulation probs

> > and

> > > excessive sweating. The past few months she has started to have

more

> > symptoms-

> > > fatigue worsening, more muscle pain, dizziness, significant weight

loss

> > (15

> > > lbs in the past 2 wks), nausea/appitite loss, new headaches and a

few

> > other

> > > things. Of course some of her drs blame alot of these symptoms on

her

> > being obese.

> > > I know that it might be affecting the symptoms but not the cause.

They

> > also

> > > seem to be happy she's losing weight. She decided to go on the

south beach

> > diet

> > > now since she's not hungry to start with and I think that the high

fat low

> > > carb diet is making her symptoms worse. Since I was diagnosed with

mito

> > now and

> > > I've told her I want her checked, she seems to not wanna think

about it.

> > She

> > > does want to believe my brother's problems are due to it though

(hes got

> > alot

> > > of behavioral issues- ODD, ADHD and suspected bipolar and he also

has a

> > hard

> > > time with infections- causing headaches and excessive

fatigue/pain, etc

> > and with

> > > mild cyclic vomiting.) I've got other family members (my aunts,

cousins,

> > etc)

> > > that also have mild symptoms- mainly dysautonomia symptoms, GI

disorders

> > and

> > > developmental/learning disabilites. I just dont know what should

be done-

> > I

> > > guess this is a question to ask my geneticist next week but I

thought I

> > would

> > > ask how those of you with other family with mito- how did they get

> > diagnosed? I

> > > guess if its a known mutation through blood its pretty easy but

since they

> > > havent found my mutation yet but suspect a MELAS variant- guess

its just

> > wait and

> > > see. There is no other way other than a muscle biopsy for them

right? Just

> > > thought I would ask- thank you for any responses.

> > > take care,

> > > Adrienne

> > >

> > >

> > >

[Guest guest]

Sal,

Hopefully that is true. Some of them may be attributing the problems to

getting older if they have mild symptoms. Others may simply be ignoring and

denying the groups of symptoms they have such as my aunt. Of course she

could never have MELAS. But she was a diabetic dependent on insulin at 35

or so, had a kdney problem, and a hearing loss also.

This in itself did not point to MELAS, but when my sister was diagnosed and

it was suggested she get tested of course she could not have it. She and my

mother were always at odds with each other even as children. To think she

might have this disease was unheard of. She died at age 58--not from kidney

problems but from a fall in church. She apparently blacked out. Sounds

very strange and mito like.

Anyway, I am glad to hear the rest of your family is not having many

problems. Unfortunately, it makes it harder for you because they do not

reallly understand then.

Have to go out to my husband's shop and help him clean up. I am still very

sore from Friday night and Saturday morning. We loaded about 20 boxes of my

friends and 4 heavy tables into the step van to take to a flea market

Saturday. Turns out it was supposed to rain Saturday (it did) and my friend

decided not to go. So, she and I lugged those boxes out of the step van

into our cars and drove them to Green Bay about 1/2 hour away, dropped them

off at a donation place. They were not open so put them in this covered

stair ramp type thing a 1/2 parking lot away from the car.

I slept almost all day yesterday and today.

So, talk to you tomorrow or next week.

Janet

my mom and other family with possible mito

> > >

> > >

> > > > Hi guys,

> > > > I just wanted to ask this- once one family member gets the

mito

> dx- what

> > > > about others with symptoms? I am the most affected in my

family of

> course-

> > > that is

> > > > how I was the first to be diagnosed. But now that I've got a

clear

> mito

> > > dx,

> > > > what about the rest of my family? My mom seems to be having

more

> and more

> > > > health concerns- she's 57 now and has been pretty healthy

other

> than

> > > obesity and

> > > > probs with hypoglycemia alot of her life. Well, the past 3-4

yrs

> shes

> > > started

> > > > having probs with fatigue, leg pain, and GI disorders. I also

> think she

> > > might

> > > > have dysautonomia like me due to low BP, some of her temp

> regulation probs

> > > and

> > > > excessive sweating. The past few months she has started to

have

> more

> > > symptoms-

> > > > fatigue worsening, more muscle pain, dizziness, significant

weight

> loss

> > > (15

> > > > lbs in the past 2 wks), nausea/appitite loss, new headaches

and a

> few

> > > other

> > > > things. Of course some of her drs blame alot of these symptoms

on

> her

> > > being obese.

> > > > I know that it might be affecting the symptoms but not the

cause.

> They

> > > also

> > > > seem to be happy she's losing weight. She decided to go on the

> south beach

> > > diet

> > > > now since she's not hungry to start with and I think that the

high

> fat low

> > > > carb diet is making her symptoms worse. Since I was diagnosed

with

> mito

> > > now and

> > > > I've told her I want her checked, she seems to not wanna think

> about it.

> > > She

> > > > does want to believe my brother's problems are due to it

though

> (hes got

> > > alot

> > > > of behavioral issues- ODD, ADHD and suspected bipolar and he

also

> has a

> > > hard

> > > > time with infections- causing headaches and excessive

> fatigue/pain, etc

> > > and with

> > > > mild cyclic vomiting.) I've got other family members (my

aunts,

> cousins,

> > > etc)

> > > > that also have mild symptoms- mainly dysautonomia symptoms, GI

> disorders

> > > and

> > > > developmental/learning disabilites. I just dont know what

should

> be done-

> > > I

> > > > guess this is a question to ask my geneticist next week but I

> thought I

> > > would

> > > > ask how those of you with other family with mito- how did they

get

> > > diagnosed? I

> > > > guess if its a known mutation through blood its pretty easy

but

> since they

> > > > havent found my mutation yet but suspect a MELAS variant-

guess

> its just

> > > wait and

> > > > see. There is no other way other than a muscle biopsy for them

> right? Just

> > > > thought I would ask- thank you for any responses.

> > > > take care,

> > > > Adrienne

> > > >

> > > >

> > > >

[Guest guest]

Hi Janet

Yes your probably right about some of my family ignoring. I think its more about

not understanding than anything else I recall some of my aunts not feeling too

good but not knowing anything about mito.. You know what else? I just learned my

uncle is on prescription and also had a seizure not long ago he's 42.

Yes your right its harder on me because at the beginning the rest of my family

did not believe I was really sick. So they always though it was all in my head..

" Yea sure " .. they are such believers that they tried to send me too all these so

called healers for $20.00 bucks!

Anyway I think you have allot more understanding about all this! When my uncle

died back in 83 everyone blamed the doctor's for his death they believe he

wasn't the same after he came out of the hospital since he had to go through a

battery of test and giving a drawer full of medication.

I'll talk to you soon.. Bye for now Janet.

my mom and other family with possible mito

> > >

> > >

> > > > Hi guys,

> > > > I just wanted to ask this- once one family member gets the

mito

> dx- what

> > > > about others with symptoms? I am the most affected in my

family of

> course-

> > > that is

> > > > how I was the first to be diagnosed. But now that I've got a

clear

> mito

> > > dx,

> > > > what about the rest of my family? My mom seems to be having

more

> and more

> > > > health concerns- she's 57 now and has been pretty healthy

other

> than

> > > obesity and

> > > > probs with hypoglycemia alot of her life. Well, the past 3-4

yrs

> shes

> > > started

> > > > having probs with fatigue, leg pain, and GI disorders. I also

> think she

> > > might

> > > > have dysautonomia like me due to low BP, some of her temp

> regulation probs

> > > and

> > > > excessive sweating. The past few months she has started to

have

> more

> > > symptoms-

> > > > fatigue worsening, more muscle pain, dizziness, significant

weight

> loss

> > > (15

> > > > lbs in the past 2 wks), nausea/appitite loss, new headaches

and a

> few

> > > other

> > > > things. Of course some of her drs blame alot of these symptoms

on

> her

> > > being obese.

> > > > I know that it might be affecting the symptoms but not the

cause.

> They

> > > also

> > > > seem to be happy she's losing weight. She decided to go on the

> south beach

> > > diet

> > > > now since she's not hungry to start with and I think that the

high

> fat low

> > > > carb diet is making her symptoms worse. Since I was diagnosed

with

> mito

> > > now and

> > > > I've told her I want her checked, she seems to not wanna think

> about it.

> > > She

> > > > does want to believe my brother's problems are due to it

though

> (hes got

> > > alot

> > > > of behavioral issues- ODD, ADHD and suspected bipolar and he

also

> has a

> > > hard

> > > > time with infections- causing headaches and excessive

> fatigue/pain, etc

> > > and with

> > > > mild cyclic vomiting.) I've got other family members (my

aunts,

> cousins,

> > > etc)

> > > > that also have mild symptoms- mainly dysautonomia symptoms, GI

> disorders

> > > and

> > > > developmental/learning disabilites. I just dont know what

should

> be done-

> > > I

> > > > guess this is a question to ask my geneticist next week but I

> thought I

> > > would

> > > > ask how those of you with other family with mito- how did they

get

> > > diagnosed? I

> > > > guess if its a known mutation through blood its pretty easy

but

> since they

> > > > havent found my mutation yet but suspect a MELAS variant-

guess

> its just

> > > wait and

> > > > see. There is no other way other than a muscle biopsy for them

> right? Just

> > > > thought I would ask- thank you for any responses.

> > > > take care,

> > > > Adrienne

> > > >

> > > >

> > > >