New member

[Guest guest]

Hi ,

I also was diagnosed with CFS 3 yrs ago and found out 6 months ago that I have a carnitine deficiency. We are now looking into other Mito diseases and trying to determine if it's worth doing a muscle biopsy as I would have to travel. Traveling worsens my condition. Any help and insight would be appreciated! Thanks!

[Guest guest]

Z

I can totally see how that could be misdiagnosed in the pediatric population too...it is commonly misdiagnosed in the adult population...you are right to assume eventually there will be more mito dxs in that world...another problem besides awareness in Mito is that there aren't enough facilities that know how to do proper testing to get accurate and thorough dx...

I am excited you have joined b/c maybe you can teach us a thing or two about advocating and raising awareness and also about the educational stuff...since all of our kids suffer from lack of energy and are easily fatigued at school, you can help us know waht to ask for and how to get it...

welcome aboard, even tho we wish you didn't have to be here!

deb

[Guest guest]

Welcome

Kerry

Faces of CFS wrote:

Dear

Mitro Members, I just

wanted to introduce myself and tell you I am looking forward to getting

to know you. I am here because my 12 year old daughter has just been

diagnosed with Mitochondrial Disease at the Cleveland Clinic. This

really was quite a shock for us as we really didn't think any tests would

be abnormal. For the past 8 years we have thought she had Chronic Fatigue

Syndrome and have been followed by a specialist. I have devoted 3/4 of

the past 8 years to supporting, advocating and educating parents on this

syndrome, how to get educational services for their children and to survive

the family issues, etc. When possible Mitro involvement was mentioned

a year and a half ago, after a period of lots of myoclonic activity, we

held off on pursuing this as the many other avenues we had tried came up

empty and we thought a muscle biopsy was needed to confirm a mitochondrial

dx. When a second specialist suggested checking it out, we went to

the Cleveland Clinic and last Wed. her initial tests came back with abnormal

Lactic Acids and Organic Acids. We are awaiting the skin biopsy results.

But the doctor is confident making the dx as it is now and said a muscle

biopsy would not help confirm it, or treat her. So

here I am in a whole new realm trying to learn enough to ask the questions

I need to ask to be able to begin to have a grasp as to what we are dealing

with. Is there anyone else out there who has a child who was initially

thought to have an illness like CFS or myofascial pain, or POTS and it

turned out to be this? Are the illnesses seperate or does the Mitro

explain the other illness? I am reading and becoming quickly overwhelmed.

Everyone tells me this is rare, but my hunch is in 10 years there may be

alot of folks dxed with CFS that really have this. I

am just happy to be here and looking forward to learning from all of you.

I see I am the second R on the list so I will go by Z. Thanks, Z

Please contact mito-owner with any problems or

questions.

[Guest guest]

Dear Mitro Members,

I just wanted to introduce myself and tell you I am looking forward to getting to know you. I am here because my 12 year old daughter has just been diagnosed with Mitochondrial Disease at the Cleveland Clinic. This really was quite a shock for us as we really didn't think any tests would be abnormal. For the past 8 years we have thought she had Chronic Fatigue Syndrome and have been followed by a specialist. I have devoted 3/4 of the past 8 years to supporting, advocating and educating parents on this syndrome, how to get educational services for their children and to survive the family issues, etc. When possible Mitro involvement was mentioned a year and a half ago, after a period of lots of myoclonic activity, we held off on pursuing this as the many other avenues we had tried came up empty and we thought a muscle biopsy was needed to confirm a mitochondrial dx. When a second specialist suggested checking it out, we went to the Cleveland Clinic and last Wed. her initial tests came back with abnormal Lactic Acids and Organic Acids. We are awaiting the skin biopsy results. But the doctor is confident making the dx as it is now and said a muscle biopsy would not help confirm it, or treat her.

So here I am in a whole new realm trying to learn enough to ask the questions I need to ask to be able to begin to have a grasp as to what we are dealing with. Is there anyone else out there who has a child who was initially thought to have an illness like CFS or myofascial pain, or POTS and it turned out to be this? Are the illnesses seperate or does the Mitro explain the other illness? I am reading and becoming quickly overwhelmed. Everyone tells me this is rare, but my hunch is in 10 years there may be alot of folks dxed with CFS that really have this.

I am just happy to be here and looking forward to learning from all of you. I see I am the second R on the list so I will go by Z.

Thanks,

Z

[Guest guest]

Dear :

Welcome to this group!

My youngest son was initially diagnosed as hypothyroid and a cyclic vomiter. He always is fatigued! I'm surprised we never got a CFS diagnosis! After 4 1/2 years treating at a neuromuscular clinic (and by the way he had very funky labs which were discounted because he didn't "look" like a metabolic kid) we got a diagnosis a year ago. 6 months later, my oldest son got a diagnosis too. His symptoms are more neurologic than neuromuscular.

You are treating at a fantastic place! I am assuming you are seeing Dr. Cohen. You couldn't ask for a better doctor....

Carol

New member

Dear Mitro Members,

I just wanted to introduce myself and tell you I am looking forward to getting to know you. I am here because my 12 year old daughter has just been diagnosed with Mitochondrial Disease at the Cleveland Clinic. This really was quite a shock for us as we really didn't think any tests would be abnormal. For the past 8 years we have thought she had Chronic Fatigue Syndrome and have been followed by a specialist. I have devoted 3/4 of the past 8 years to supporting, advocating and educating parents on this syndrome, how to get educational services for their children and to survive the family issues, etc. When possible Mitro involvement was mentioned a year and a half ago, after a period of lots of myoclonic activity, we held off on pursuing this as the many other avenues we had tried came up empty and we thought a muscle biopsy was needed to confirm a mitochondrial dx. When a second specialist suggested checking it out, we went to the Cleveland Clinic and last Wed. her initial tests came back with abnormal Lactic Acids and Organic Acids. We are awaiting the skin biopsy results. But the doctor is confident making the dx as it is now and said a muscle biopsy would not help confirm it, or treat her.

So here I am in a whole new realm trying to learn enough to ask the questions I need to ask to be able to begin to have a grasp as to what we are dealing with. Is there anyone else out there who has a child who was initially thought to have an illness like CFS or myofascial pain, or POTS and it turned out to be this? Are the illnesses seperate or does the Mitro explain the other illness? I am reading and becoming quickly overwhelmed. Everyone tells me this is rare, but my hunch is in 10 years there may be alot of folks dxed with CFS that really have this.

I am just happy to be here and looking forward to learning from all of you. I see I am the second R on the list so I will go by Z.

Thanks,

ZPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi, ,

I am new at this game, too. Just wanted to welcome you to the Mito

family.

Too drained to go into Spencers story. Short version. He is 16

months old and suspected with a mito disorder. We are waiting

results from the frozen muscle biopsy. We will go to Atlanta to see

Shoffner if the results from the FMB are inconclusive.

Bec

[Guest guest]

Hi . Welcome to the group.

>Is there anyone else out there who has a child who was

>initially thought to have an illness like CFS or myofascial pain, or POTS

>and it turned out to be this?

I have read in one of the articles on the UMDF.org web site that adults

with mito are sometimes misdiagnosed with CFS.

I don't know about POTS specifically, but a couple of kids in this group,

including my daughter Emilie, were first diagnosed with dysautonomia.

It's now thought Emilie's dysautonomia may be caused by mitochondrial

disease (still waiting on lab results to see if she, in fact, has mito).

-- Mom to:

Emilie (16), cerebral palsy, learning disabilities, suspected mito with

many autonomic symptoms

Kaitlin (16), cerebral palsy, asthma, a few autonomic symptoms

Ian (20) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

julie

ally has had blood and urine test done and dr.whiteman said it was pointing to a mito i can't remember what he all said about the test. i just can't wait till she has the biopsy done so know what we are facing here . thanks writing back.

misie

[Guest guest]

Hi ,

Please do not torture yourself for the back slide. It happens to

the best of families and you just start over. I don't know if this

might be a closer option for you but my dear friend Dr.

uses the Ponseti method for clubfeet and works with OI. He is at SIU

in Spring field Ill. #2175457700

Good Luck " The Castlady "

-- In nosurgery4clubfoot , " prvrbs31wife "

<prvrbs31wife@y...> wrote:

> Hi everyone.

> My name is . My 4th daughter was born with two club feet.

> Her name is Shalom. She is now 10 and a half months old. She was

> late in starting the casting as the Dr.s here in Winnipeg were very

> unconserned and I was possitive we wanted to go with the Ponseti

> method. I finally found a Dr. at the Montreal Shriners hospital

> trained in this method. So she started at 10 weeks of age. She also

> has Brittle Bone disorder (all 3 siblings also have it) so Dr.

> Beneroch was gentle. It took a bit more casting more frequently to

> correct her feet. I posted a pic in the photos of her feet after

her

> heel cord surgery, post-op 3 weeks. Couldn't post anything else as

> the album is too full.

> Well I just returned from Montreal tonight. Dr. Beneroch told me

> what I already knew. Re-casting is neccessary due to my lack of

> diligence with the bar. Her left foot is turning in again. I think

> the part I hate the most about the bar is when she rolls over with

> the bar on, her one legs rising in the air to roll while the other

> bottom foot ends up twisting backwards completly. Ugh, it's horrid

> to see.

> So, we are actually moving to the State of Arkansas the 1st of July

> so I have to find a Dr. to do the re-casting once we get there. I

> have found two in other States so far. Dr.Plotkin in Omaha, though

> I've seen him before in Montreal for the Brittle Bones I'm not sure

> he does Ponseti, and a Dr. Dobbs in St. Louis at another Shriners

> Hospital. I have e-mails to both Dr.s for more info.

> Well tht's all for now. Glad to have found this group. Feeling like

> a horrid mom cause we have to cast again.

> jennifer

[Guest guest]

welcome aboard, sue. wtg on grabbing the reigns of your life. &

btw, i started w/ a BMI of 42/43 & now i'm " normal " . keep reading &

posting, we run the gammut of experiences.

lori h.

> Hello, all. My name is Sue and I am a new member from northern

Arizona. I took me a year and a

> half to decide that this was the route for me. During that time

gave it

> one more honest try to lose weight on my own ... it didn't happen.

I'll

> tell you that anyone who says this is the easy way has to be

ignorant.

> This is a life change tool that requires such dedication to

follow all

> the guidelines. I know I can do this.

>

> As I have read your posts I realize that I do not have the great

amount to

> lose as many of you do. At 5'5 " , I weight 253 and I am 56 years

old. I

> have been steadily going up since I turned 40. My mother, who is

now 76,

> did the same and now she is 300+ and having great difficulty

caring for my

> father because of her inability to be mobile - and I might add,

this lady

> was a dieter with the strength of Job - exercised, dieted

faithfully and

> yet she has been rewarded with this in her golden years. I SEE THE

> WRITING ON THE WALL - we are so alike. I already have pain in my

knees,

> hips, and back, high blood pressure, acid reflux, shortness of

breath and

> my father was diagnosed with diabetes.

>

> I am scheduled for pre-op visit on March 19 ( that's so far away)

but I

> understand the wisdom of preparing my body. My surgery will be by

Dr.

> Koler at the WISH Center in Tempe, Arizona. Has anyone else been

to this

> Center or had experience with this doctor?

>

> A great day to all,

> Sue

[Guest guest]

HI All thank you for the warm welcome. My computer decided to go crazy and I have over 40,000 emails.....So please be patient.TY

In memory of my Daddy ph & Mommy both died from smoking.In your travels if you know someone that is in need of a caring touch, is sick, dying, has lost someone to death please go to this website http://www.angelsforhope.org and have an angel sent to them.</P>

-- New member

Hey, everyone!

Welcome lmiceli@..., a new member. Tell us a little about yourself. I'm ; I have Crohn's Disease, & take prednisone, 6-MP, Remicade, & a bunch of other meds. I'm still able to work (or at least pretend I feel good enough to work). You'll find we're usually a chatty bunch - no politics or religion, but anything else can be discussed, & I do mean anything.

I can't believe I'm the first to welcome a new member! Right now I have 1223 messages in my inbox - I'm reading the new ones first.

Hugs,

[Guest guest]

And I thought 1200 emails was bad!

-- New member

Hey, everyone!

Welcome lmiceli@..., a new member. Tell us a little about yourself. I'm ; I have Crohn's Disease, & take prednisone, 6-MP, Remicade, & a bunch of other meds. I'm still able to work (or at least pretend I feel good enough to work). You'll find we're usually a chatty bunch - no politics or religion, but anything else can be discussed, & I do mean anything.

I can't believe I'm the first to welcome a new member! Right now I have 1223 messages in my inbox - I'm reading the new ones first.

Hugs,

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

I just noticed that this new member is our beloved "old member " K". Glad you're back.! Hope all is well in your side of the world.

Love,

Jane

New member

,

Is that you again? Welcome back.

P.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here Please visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

,

Welcome to the group!! We are all so happy you found us. You will

love us lol,, i'm so humble huh?

Happy turkey day!!!

Shell

> Hi all!

> My name is and I am debating on getting the surgery. I'm 30

years old, 280 lbs. 5' 4 " . My BMI is 48.5 and my husband is gently

encouraging me to go this route. He is concerned for my future

health. We have Kaiser ins., and I am calling tomorrow to set up a

consultation. I have read back through many of the posts and know

that this is a great group of supportive people!

>

> - Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com