I am new to this group and to Mitochondrial Myopathy ... Thank you for making this group!!!

[Guest guest]

Hello ...

My name is Gwenni ... I am a 30 year old single mom of three boys ages 11, 5,

and 9 months ... I was diagnosed with Fibromyalgia/Myofacial Pain Syndrome

Complex in April 2000 and have been found legally disabled as of July 2001...

I went in for a regular check up with my Rheumatologist and after an exam and

him asking me some questions about how I had been feeling and what symptoms I

was dealing with ... he had told me that he wanted to run a special kind of

blood test on me as he believed that I may have a " connective tissue disease "

and just left it at that ... I scheduled the appointment to get the blood test

done and just got the results of that blood test on Wednesday this week when I

went back in to see my Rheumatologist and I was told that he found for sure that

I have a Metabolic Myopathy ... and more specifically it was explained to me

that it is because of a genetic defect of my mytochondria (thankfully I paid

attention in Biology to know what that word meant) ... he then told me that I

need to get another blood test done and I went in for that testing on Friday in

which I had to be poked with a needle 4 times to draw my blood (which would have

been 5 except for the fact that the Phlebotomist was nice enough to just switch

the thing he was taking my blood with while the needle was still in my arm to

save me from another poke) I will have the results from that second blood test

early next week from what I was told by the nurse ... my Rheumatologist said

that this test will be more specific so I will know which form of mitochondrial

myopathy that I have ... I have searched online for information in the mean time

and most of the information that I have come across is in relation to either

infants and children's forms of this disease (which after reading about it just

broke my heart) ... so when I found this group I was so grateful to whomever it

was that created it specifically for those of us with the Adult form of this

disease and I signed up right away ... thank you all for being here to share

your knowledge with others ... though I am sorry that anyone of you has to live

with this disease ... and I am sorry it has taken me a couple of days to get my

intro posted as I have been busy with appointments all week and with my three

boys I have wore out my precious energy quite definately ... I look forward to

getting to know all of you and I am hopeful that one day there will be a cure so

that none of us will be fatigued or in any pain because of this cruel disease

....

Brightest Blessings ...

~ Gwenni ~

[Guest guest]

Gwenni and all the other newbies,

Welcome to Mitoldies! My name is and I am the younger sister of

Laurie on the list. I just wanted to pop in and say hi and welcome.

This is a GREAT group of caring knolegable people.

I hope to post more next week. Right now I am busy getting my daughter

ready for MDA camp tomorrow. We both love it. She has fun and I get a

break.

Gwenni wrote:

>Hello ...

>

>My name is Gwenni ... I am a 30 year old single mom of three boys ages 11, 5,

and 9 months ... I was diagnosed with Fibromyalgia/Myofacial Pain Syndrome

Complex in April 2000 and have been found legally disabled as of July 2001...

>I went in for a regular check up with my Rheumatologist and after an exam and

him asking me some questions about how I had been feeling and what symptoms I

was dealing with ... he had told me that he wanted to run a special kind of

blood test on me as he believed that I may have a " connective tissue disease "

and just left it at that ... I scheduled the appointment to get the blood test

done and just got the results of that blood test on Wednesday this week when I

went back in to see my Rheumatologist and I was told that he found for sure that

I have a Metabolic Myopathy ... and more specifically it was explained to me

that it is because of a genetic defect of my mytochondria (thankfully I paid

attention in Biology to know what that word meant) ... he then told me that I

need to get another blood test done and I went in for that testing on Friday in

which I had to be poked with a needle 4 times to draw my blood (which would have

been 5 except for the fact that the Phlebotomist was nice enough to just switch

the thing he was taking my blood with while the needle was still in my arm to

save me from another poke) I will have the results from that second blood test

early next week from what I was told by the nurse ... my Rheumatologist said

that this test will be more specific so I will know which form of mitochondrial

myopathy that I have ... I have searched online for information in the mean time

and most of the information that I have come across is in relation to either

infants and children's forms of this disease (which after reading about it just

broke my heart) ... so when I found this group I was so grateful to whomever it

was that created it specifically for those of us with the Adult form of this

disease and I signed up right away ... thank you all for being here to share

your knowledge with others ... though I am sorry that anyone of you has to live

with this disease ... and I am sorry it has taken me a couple of days to get my

intro posted as I have been busy with appointments all week and with my!

> three boys I have wore out my precious energy quite definately ... I look

forward to getting to know all of you and I am hopeful that one day there will

be a cure so that none of us will be fatigued or in any pain because of this

cruel disease ...

>

>Brightest Blessings ...

>

>~ Gwenni ~

>

>

[Guest guest]

Gwenni,

I want to welcome you to the group. I am glad you have found us,

but not glad about why you have to be here. I have found this group to

be a caring, knowledgeable, and supportive extended family.

Smiles,

a

On Sat, 26 Jun 2004 02:34:23 -0500 " Gwenni " glfulton@...>

writes:

Hello ...

My name is Gwenni ... I am a 30 year old single mom of three boys ages

11, 5, and 9 months ... I was diagnosed with Fibromyalgia/Myofacial Pain

Syndrome Complex in April 2000 and have been found legally disabled as of

July 2001...

I went in for a regular check up with my Rheumatologist and after an exam

and him asking me some questions about how I had been feeling and what

symptoms I was dealing with ... he had told me that he wanted to run a

special kind of blood test on me as he believed that I may have a

" connective tissue disease " and just left it at that ... I scheduled the

appointment to get the blood test done and just got the results of that

blood test on Wednesday this week when I went back in to see my

Rheumatologist and I was told that he found for sure that I have a

Metabolic Myopathy ... and more specifically it was explained to me that

it is because of a genetic defect of my mytochondria (thankfully I paid

attention in Biology to know what that word meant) ... he then told me

that I need to get another blood test done and I went in for that testing

on Friday in which I had to be poked with a needle 4 times to draw my

blood (which would have been 5 except for the fact that the Phlebotomist

was nice enough to just switch the thing he was taking my blood with

while the needle was still in my arm to save me from another poke) I will

have the results from that second blood test early next week from what I

was told by the nurse ... my Rheumatologist said that this test will be

more specific so I will know which form of mitochondrial myopathy that I

have ... I have searched online for information in the mean time and most

of the information that I have come across is in relation to either

infants and children's forms of this disease (which after reading about

it just broke my heart) ... so when I found this group I was so grateful

to whomever it was that created it specifically for those of us with the

Adult form of this disease and I signed up right away ... thank you all

for being here to share your knowledge with others ... though I am sorry

that anyone of you has to live with this disease ... and I am sorry it

has taken me a couple of days to get my intro posted as I have been busy

with appointments all week and with my three boys I have wore out my

precious energy quite definately ... I look forward to getting to know

all of you and I am hopeful that one day there will be a cure so that

none of us will be fatigued or in any pain because of this cruel disease

....

Brightest Blessings ...

~ Gwenni ~

[Guest guest]

Thanks for introducing yourself ... I look forward to getting to know you and

I hope your daughter has a great time at camp ... Enjoy your break ...

~ Gwenni ~

Re: I am new to this group and to Mitochondrial Myopathy

.... Thank you for making this group!!!

Gwenni and all the other newbies,

Welcome to Mitoldies! My name is and I am the younger sister of

Laurie on the list. I just wanted to pop in and say hi and welcome.

This is a GREAT group of caring knolegable people.

I hope to post more next week. Right now I am busy getting my daughter

ready for MDA camp tomorrow. We both love it. She has fun and I get a

break.

[Guest guest]

Thanks a ...

I am happy that I found you all too ... it is strange how such a bad thing

can bring so many wonderful people together ... yet I am willing to be grateful

that I was able to meet such a great group of people with whom I can share

support, information and friendship while dealing with such a cruel disease ...

you all have made me feel so welcome that I can't even put in to words how

thankful I am to have met all of you here ... I can see that this group is a

true blessing during a very upsetting time in my life and I am sure that this

group will continue to be a part of the rest of my days ...

Brightest Blessings

~ Gwenni ~

Re: I am new to this group and to Mitochondrial Myopathy

.... Thank you for making this group!!!

Gwenni,

I want to welcome you to the group. I am glad you have found us,

but not glad about why you have to be here. I have found this group to

be a caring, knowledgeable, and supportive extended family.

Smiles,

a

[Guest guest]

Hi Gwennie,

Welcome to the group! I'm still waiting for a diagnosis. I've had

many tests as well as a muscle biopsy and still have no answers. I

was wonderng if you knew the names of the blood tests your

Rheumatologist ordered. I'm always on the lookout for any tests that

might provide answers. Thanks for your help.

Lynn

> Hello ...

>

> My name is Gwenni ... I am a 30 year old single mom of three boys

ages 11, 5, and 9 months ... I was diagnosed with

Fibromyalgia/Myofacial Pain Syndrome Complex in April 2000 and have

been found legally disabled as of July 2001...

> I went in for a regular check up with my Rheumatologist and after

an exam and him asking me some questions about how I had been

feeling and what symptoms I was dealing with ... he had told me that

he wanted to run a special kind of blood test on me as he believed

that I may have a " connective tissue disease " and just left it at

that ... I scheduled the appointment to get the blood test done and

just got the results of that blood test on Wednesday this week when

I went back in to see my Rheumatologist and I was told that he found

for sure that I have a Metabolic Myopathy ... and more specifically

it was explained to me that it is because of a genetic defect of my

mytochondria (thankfully I paid attention in Biology to know what

that word meant) ... he then told me that I need to get another

blood test done and I went in for that testing on Friday in which I

had to be poked with a needle 4 times to draw my blood (which would

have been 5 except for the fact that the Phlebotomist was nice

enough to just switch the thing he was taking my blood with while

the needle was still in my arm to save me from another poke) I will

have the results from that second blood test early next week from

what I was told by the nurse ... my Rheumatologist said that this

test will be more specific so I will know which form of

mitochondrial myopathy that I have ... I have searched online for

information in the mean time and most of the information that I have

come across is in relation to either infants and children's forms of

this disease (which after reading about it just broke my heart) ...

so when I found this group I was so grateful to whomever it was that

created it specifically for those of us with the Adult form of this

disease and I signed up right away ... thank you all for being here

to share your knowledge with others ... though I am sorry that

anyone of you has to live with this disease ... and I am sorry it

has taken me a couple of days to get my intro posted as I have been

busy with appointments all week and with my three boys I have wore

out my precious energy quite definately ... I look forward to

getting to know all of you and I am hopeful that one day there will

be a cure so that none of us will be fatigued or in any pain because

of this cruel disease ...

>

> Brightest Blessings ...

>

> ~ Gwenni ~

>

>

[Guest guest]

Lynn ...

Thanks for the welcome ... but I am sorry that I don't know what tests my

doctor ordered and I am also still waiting for a specific diagnosis from him ...

I called his office today to ask but his nurse wasn't available at the time and

I didn't get a call back from them today so I am hopeful I will hear back from

them tomorrow ... but I can ask what blood tests the did so I can let you know

.... I am also talking with my aunt whom I think is also dealing with Mito and I

need to know what they tested me for so I can let her know what to ask her

doctor to test her for ... I hope I will know more tomorrow ...

~ Gwenni ~

Re: I am new to this group and to Mitochondrial Myopathy

.... Thank you for making this group!!!

Hi Gwennie,

Welcome to the group! I'm still waiting for a diagnosis. I've had

many tests as well as a muscle biopsy and still have no answers. I

was wonderng if you knew the names of the blood tests your

Rheumatologist ordered. I'm always on the lookout for any tests that

might provide answers. Thanks for your help.

Lynn

> Hello ...

>

> My name is Gwenni ... I am a 30 year old single mom of three boys

ages 11, 5, and 9 months ... I was diagnosed with

Fibromyalgia/Myofacial Pain Syndrome Complex in April 2000 and have

been found legally disabled as of July 2001...

> I went in for a regular check up with my Rheumatologist and after

an exam and him asking me some questions about how I had been

feeling and what symptoms I was dealing with ... he had told me that

he wanted to run a special kind of blood test on me as he believed

that I may have a " connective tissue disease " and just left it at

that ... I scheduled the appointment to get the blood test done and

just got the results of that blood test on Wednesday this week when

I went back in to see my Rheumatologist and I was told that he found

for sure that I have a Metabolic Myopathy ... and more specifically

it was explained to me that it is because of a genetic defect of my

mytochondria (thankfully I paid attention in Biology to know what

that word meant) ... he then told me that I need to get another

blood test done and I went in for that testing on Friday in which I

had to be poked with a needle 4 times to draw my blood (which would

have been 5 except for the fact that the Phlebotomist was nice

enough to just switch the thing he was taking my blood with while

the needle was still in my arm to save me from another poke) I will

have the results from that second blood test early next week from

what I was told by the nurse ... my Rheumatologist said that this

test will be more specific so I will know which form of

mitochondrial myopathy that I have ... I have searched online for

information in the mean time and most of the information that I have

come across is in relation to either infants and children's forms of

this disease (which after reading about it just broke my heart) ...

so when I found this group I was so grateful to whomever it was that

created it specifically for those of us with the Adult form of this

disease and I signed up right away ... thank you all for being here

to share your knowledge with others ... though I am sorry that

anyone of you has to live with this disease ... and I am sorry it

has taken me a couple of days to get my intro posted as I have been

busy with appointments all week and with my three boys I have wore

out my precious energy quite definately ... I look forward to

getting to know all of you and I am hopeful that one day there will

be a cure so that none of us will be fatigued or in any pain because

of this cruel disease ...

>

> Brightest Blessings ...

>

> ~ Gwenni ~

>

>