Hi Angie Re: Newly Diagnosed

[Guest guest]

Hi Angie, Wecome! You have surely come to the right

place,where other mitos have a first hand understanding of both

mito, and the trials of mito. I am newly diagnosed, and a new-ish

memeber of the group, myself. I have found this group to be very

knowledgeable and extremely compassionate. We're sort of like

the understanding, comforting extended famliy that many don't

have. To my way of thinking, congratulations are in order to you

for having made it through the diagnosis " hoops " . I kind of think

that, for some of us, that's probably close to the hardest, and

often the most stressful part.

YOU are SO LUCKY to have Dr Shoffner in your court!!!!!!!

The fact that the majority of the info on the Internert DOS deal

with pediatric cacses makes this newsgroup all the more

special. If you haven't already been to the www.nmdf.org site, I

urge you to read Dr, Bruce Cohen's artivle on " Mitochondrial

Cyopathies in Adults " . It's located under " info " on the top left,

then scroll down to " Healthcare professionals " . A link for his

article in about 1/2 way down the right hand side of the page that

comes up.

I don't have your kind of mito, so I can't comment on anything

helpful, but lots of poeple in the group do, so I'm sure you're

going to get lots of feedback and feel right at home. You don't

have to go through this alone!

Best Wishes,

Anita in PA

(Thiamine-responsive PDH)

[Guest guest]

Anita ...

Thank you so much for posting the info about Dr. Bruce Cohen's article ... after

reading that I finally have a small idea of what this disease really is and how

it may affect me depending on which kind of myopathy I have ... I can tell that

this group will be a big source of information and support ... and in return I

will do my best to give back what I have been given by all of you ... thank you

for being here

~ Gwenni ~

Hi Angie Re: Newly Diagnosed

Hi Angie, Wecome! You have surely come to the right

place,where other mitos have a first hand understanding of both

mito, and the trials of mito. I am newly diagnosed, and a new-ish

memeber of the group, myself. I have found this group to be very

knowledgeable and extremely compassionate. We're sort of like

the understanding, comforting extended famliy that many don't

have. To my way of thinking, congratulations are in order to you

for having made it through the diagnosis " hoops " . I kind of think

that, for some of us, that's probably close to the hardest, and

often the most stressful part.

YOU are SO LUCKY to have Dr Shoffner in your court!!!!!!!

The fact that the majority of the info on the Internert DOS deal

with pediatric cacses makes this newsgroup all the more

special. If you haven't already been to the www.nmdf.org site, I

urge you to read Dr, Bruce Cohen's artivle on " Mitochondrial

Cyopathies in Adults " . It's located under " info " on the top left,

then scroll down to " Healthcare professionals " . A link for his

article in about 1/2 way down the right hand side of the page that

comes up.

I don't have your kind of mito, so I can't comment on anything

helpful, but lots of poeple in the group do, so I'm sure you're

going to get lots of feedback and feel right at home. You don't

have to go through this alone!

Best Wishes,

Anita in PA

(Thiamine-responsive PDH)

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