Hi Gwenni

June 27, 2004

Hi Gwenni,

Welcome to our group. Glad you found us, b/c this disease is so overwhelming and

so new in the medical world that we all need a group to call Family and a place

to reap information and friendship.

I am 44 yrs old and was dx'd in 1995 with Mitochondrial Encephalomyopathy by a

muscle biopsy. It took me almost 10 yrs to finally get a correct diagnosis.

Your Rheume sounds like one terrific doctor. I am amazed that by you telling her

your symptoms and an exam that it rang a bell in his head and he suspected a

Metabolic Myopathy. It takes most docs years and years to finally think along

those lines and some never do.

Can I ask what blood tests your Rheumatologist ran on you the first time? And

what blood tests did you have taken this second time? I am interested in what

they were. Some people on the list don't yet have a diagnosis and maybe the

names of the blood tests that you had done might be of a benefit to them as they

continue to search for their diagnosis.

And your right our energy is very dear to us all and it is so hard for me to

know when to STOP what I am doing and REST. I always think that I can do just

alittle more, but as always I pay for it in the end. And with your 3 boys they

must use up most of your energy.

Once again welcome to the group. Sorry we all have to meet this way but it is

reassuring to know we have a great place to go to.

Hugs,

Ann-Marie

I am new to this group and to Mitochondrial Myopathy ...

Thank you for making this group!!!

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 ~

June 28, 2004

Ann-Marie ...

Thank you to for the warm welcome to this wonderful group ... I feel very

blessed to have the Rheumatologist that I have ... he is wonderful ... I also

feel very blessed to have found this wonderful group ... I will ask to see if

I can get a copy of the blood work they did both times and then I will post the

info to the group ... I should be able to find out the info sometime this week

.... I will call my Rheumatologist's office tomorrow morning ...

~ Gwenni ~

I am new to this group and to Mitochondrial Myopathy ...

Thank you for making this group!!!

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