New Here

[Guest guest]

Cindy, mine was laparscopic, so others will have to fill you in on that

part, and recuperation. The best thing I did for myself prior to surgery

was having all the foods I'd need purchases, including vitamins, etc. I put

them all in one place, so when I needed to eat, there they were. My

dietician gave me a list of what to eat each week for 6 weeks. I'd give

them to you, but what I'm noticing on here is every doctor is so different

in what they think you should eat, and what kinds of vitamins. You

certainly have your work cut out for you, being a single mom, having a young

child that needs lots of time, and working too. Do you have help in place

for while you are in the hospital, and when you get home? Seems many " open "

patients advise a recliner. I'll wait to see what others come up with.

Joan

LAP RNY 11/18/03

Dr. Higa, Fresno, CA

282pre-op/275surg/240/140

[Guest guest]

Cindy, you're so lucky to have such good support to help you out. I think

we all have our fears. I don't think we would be knowledgeable about the

surgery if we didn't. I did a lot of letter writing, organization, showed

my hubby where all the papers, files, bank accounts, medical decisions, etc.

were. Freaked him out, but gave me peace of mind. In my mind, I was going

to die early from so many medical problems that this was a far safer journey

for me.

Joan

LAP RNY 11/18/03

Dr. Higa, Fresno, CA

282pre-op/275surg/240/140

[Guest guest]

Cindy, you're so lucky to have such good support to help you out. I think

we all have our fears. I don't think we would be knowledgeable about the

surgery if we didn't. I did a lot of letter writing, organization, showed

my hubby where all the papers, files, bank accounts, medical decisions, etc.

were. Freaked him out, but gave me peace of mind. In my mind, I was going

to die early from so many medical problems that this was a far safer journey

for me.

Joan

LAP RNY 11/18/03

Dr. Higa, Fresno, CA

282pre-op/275surg/240/140

[Guest guest]

Hi Cindy, welcome to our group. I would say you should be able to

do most of the care for your daughter after 2 weeks. The thing I

would start working with her on is to start getting herself up on the

bed or table. You are not going to be able to lift her for probably

about 3 monthes. Of course this depends on your dr. guide lines. If

you can get her used to climbing a stool to get to her highchair or

into bed before handIt well be so much easier after. I remeber after

my 2nd c section I went to put my 17 month old to bed. I had always

carried her up stairs and placed her in bed. When I tried to get her

to walk up the stairs, we both ended up in tears. Good luck on your

up coming surgery.

JIll H.

[Guest guest]

Hi Cindy, welcome to our group. I would say you should be able to

do most of the care for your daughter after 2 weeks. The thing I

would start working with her on is to start getting herself up on the

bed or table. You are not going to be able to lift her for probably

about 3 monthes. Of course this depends on your dr. guide lines. If

you can get her used to climbing a stool to get to her highchair or

into bed before handIt well be so much easier after. I remeber after

my 2nd c section I went to put my 17 month old to bed. I had always

carried her up stairs and placed her in bed. When I tried to get her

to walk up the stairs, we both ended up in tears. Good luck on your

up coming surgery.

JIll H.

[Guest guest]

on 7/11/04 12:24 PM, Kim Huschke at huschke@... wrote:

Hi everyone, I just found the list today and joined immediately. Let

me introduce myself.

My name is Kim and I live in North Texas (about 60 miles north of

Dallas).

======================

Hi Kim!! My folks live in Paris and my husband's folks live in Garland, so I

am very familiar with the North Texas area! When I was a little girl, we

used to drive to Denison to the Sher-Den Mall (long since defunct, of

course) to go shopping. My husband did his undergraduate work at Austin

College in Sherman. We're a long way from there now, though -- we live in

Des Moines, Iowa. : )

Glad you could join us. Kudos on your terrific success so far.

--

Kris Wood

ListMom, OSSG-pregnant

" Does it not occur to you...that by purging all sacred images, references,

and words from our public life, you are leaving us with nothing but a cold

temple presided over by the Goddess of Reason -- that counterfeit deity who,

as history has proved time and time and time again, inspires no affection,

retains no loyalties, soothes no grief, justifies no sacrifice, gives no

comfort, extends no charity, displays no pity, and offers no hope, except to

the tiny cliques of fanatical ideologues who tend her cold blue flame? "

-- Derbyshire

Need to harmlessly waste some time? Try these:

http://snowflakes.lookandfeel.com/

http://www.addictinggames.com/

[Guest guest]

welcome kim and congrats on such a great weight loss. i'm jennifer 4 months

post op (tomorrow!) and i've lost 95 lbs and i am 2 months preggo. in the past

when on bcp it's taken me two cycles to get preggo. i think you will do great

and hope you like the group...jenn

>

>

> Date: 2004/07/11 Sun PM 01:24:01 EDT

> To: OSSG-pregnant

> Subject: new here

>

>

[Guest guest]

Congratulations on a great weight loss. The ladies who come to this group

soon find themselves very fertile after losing weight so good concieving too

luck

to you. I would wait 2 cycles after stoppingt he pills too to get your

hormones back in order.

God Bless,

Robin, NorthEastern, NY

Age- 41

EDD- July 27th, 2004

IT'S A BOY!!!!!!

Mommy to:

&

(twin boys 8 years),

Madison, daughter, 5 years and

Wife to Pup 15 years (October 31, 1988)

Gastric Bypass Surgery-

October 18th 2002

Start-378, current- 246(pregnant)

goal 170 after baby

It's a BOY!!!!!

Emerson Roger

[Guest guest]

Marla

Welcome to the group.

I'll give you my take on the biopsy subject and others will probably

have others. I think it is a personal thing and different each person.

Whatever the decision, it is okay. There really isn't a right or wrong

decision. If your doctor is certain that you have it, then you need to

ask yourself if that is enough. I don't know anything more than I have

a complex I defect in spite of extensive genetic testing which is very

expensive and done in only couple of places. I needed to know what I

had after 15 years of trying to find a diagnosis and several frozen

biopsies. I went to Atlanta for a fresh biopsy to finally get a

diagnosis.

I think there are factors that need to be thought of - do I need a

definitive diagnosis in order to get disability pay or services; do I

already have life insurance and what will a definitive diagnosis do in

case I want more; do I need this to help my primary care doctor to

believe me; do I need this to help family understand my needs. We all

have different answers to these questions and others.

I guess you might want to check and see how many mito patients the MDA

doc sees or is this a stab in the dark.

I hope I haven't muddied the waters for you.

laurie

> Hi, My name is Marla, I'm a 47 yr old woman. After several years of mis

> diagnosis and guessing, I was told yesterday that I have probable

> mitochondrial myopathy. I now use crutches to walk, but think I'll need

> some other form of help soon. One question I have; Yesterday I had my

> 3rd EMG. I saw the MDA doc who told me he is certain that I do have

> Mito, but won't give me the offical dx without a biopsy. He says the

> prognosis is the same for me, if I know which kind or not. Is leaving

> the biopsy decision up to me. I really want a name for this, but not

> sure it's worth the pain. I had a biospy done a few yrs back, but it

> wasn't done correctly. He also said they may not know even after the

> biopsy. Would like any thoughts on this. I'm so happy to have found a

> support group, I don't know anyone else trying to cope with this kind

> of disease. Hope to get to know you all soon.

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Laurie- Thanks for your input. Since he (the MD doc) won't give me any official

diagnosis with out the biopsy, I'm leaning on having it done. I'm on SS

disability, but think it may be very difficult to get the medical equipment, PT,

OT and symptomatic care I need if there isn't something concrete on my chart. My

income fromSS is very low, so I also get medicaid. My primary doctor has been a

prince, he's pushed for someone to give me the diagnosis, since he is convinced

that it is correct. When I had the EMG yesterday I had no idea that the MDA doc

would be there to oversee things. Guess he considered that his consultation.

Quite frankly I wasn't prepared to see him and don't think he got the full

picture. He asked me questions while they were sticking needles in me, I wasn't

on top of my game. I'll wait to see if anyone else has some imput, plus wait to

see what the report says from my visit yesterday.

Thanks!! Marla

Laurie Fitzgerald laurie.fitzgerald@...> wrote:

Marla

Welcome to the group.

I'll give you my take on the biopsy subject and others will probably

have others. I think it is a personal thing and different each person.

Whatever the decision, it is okay. There really isn't a right or wrong

decision. If your doctor is certain that you have it, then you need to

ask yourself if that is enough. I don't know anything more than I have

a complex I defect in spite of extensive genetic testing which is very

expensive and done in only couple of places. I needed to know what I

had after 15 years of trying to find a diagnosis and several frozen

biopsies. I went to Atlanta for a fresh biopsy to finally get a

diagnosis.

I think there are factors that need to be thought of - do I need a

definitive diagnosis in order to get disability pay or services; do I

already have life insurance and what will a definitive diagnosis do in

case I want more; do I need this to help my primary care doctor to

believe me; do I need this to help family understand my needs. We all

have different answers to these questions and others.

I guess you might want to check and see how many mito patients the MDA

doc sees or is this a stab in the dark.

I hope I haven't muddied the waters for you.

laurie

---------------------------------

__________________________________________________

[Guest guest]

Marla,

As Laurie said it is a personal thing and she pointed out many of the factors I

thought of and some I did not. I am fortunate in that I was diagnosed in 1997

via a blood test with one of the more " common " forms of mito--MELAS. My sister

was first diagnosed in 1996 via a blood test but did have an " emergency " biopsy

when she went into a two week coma--that was her 3rd coma in two yrs, 2nd one in

3 months.

Anyhow, for me I did go thru extensive testing at the medical college in WI to

determine a " baseline " . Before I did the genetic testing I also asked myself

the same questions but if I were to go thru a biopsy I do not think I would do

it unless I needed a definite diagnosis to get medical help. One question the

doc asked before we did the genetic testing was if I had all the life insurance

I wanted because even though they are not supposed to discrimiate based on mito

they may.

We had my son tested because we needed to let the school know the reasons why he

sometimes could not be woken up in the morning for school and slept sometimes 20

hrs per day when he got sick.

Janet Sample

Re: New Here

Marla

Welcome to the group.

I'll give you my take on the biopsy subject and others will probably

have others. I think it is a personal thing and different each person.

Whatever the decision, it is okay. There really isn't a right or wrong

decision. If your doctor is certain that you have it, then you need to

ask yourself if that is enough. I don't know anything more than I have

a complex I defect in spite of extensive genetic testing which is very

expensive and done in only couple of places. I needed to know what I

had after 15 years of trying to find a diagnosis and several frozen

biopsies. I went to Atlanta for a fresh biopsy to finally get a

diagnosis.

I think there are factors that need to be thought of - do I need a

definitive diagnosis in order to get disability pay or services; do I

already have life insurance and what will a definitive diagnosis do in

case I want more; do I need this to help my primary care doctor to

believe me; do I need this to help family understand my needs. We all

have different answers to these questions and others.

I guess you might want to check and see how many mito patients the MDA

doc sees or is this a stab in the dark.

I hope I haven't muddied the waters for you.

laurie

> Hi, My name is Marla, I'm a 47 yr old woman. After several years of mis

> diagnosis and guessing, I was told yesterday that I have probable

> mitochondrial myopathy. I now use crutches to walk, but think I'll need

> some other form of help soon. One question I have; Yesterday I had my

> 3rd EMG. I saw the MDA doc who told me he is certain that I do have

> Mito, but won't give me the offical dx without a biopsy. He says the

> prognosis is the same for me, if I know which kind or not. Is leaving

> the biopsy decision up to me. I really want a name for this, but not

> sure it's worth the pain. I had a biospy done a few yrs back, but it

> wasn't done correctly. He also said they may not know even after the

> biopsy. Would like any thoughts on this. I'm so happy to have found a

> support group, I don't know anyone else trying to cope with this kind

> of disease. Hope to get to know you all soon.

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Stormy

Welcome to the group. You certainly have found folks who know what it

is like to have these symptoms.

laurie

> Hi everyone,Just wanted to introduce myself, I am Stormy, and from

> where I stand all signs of my health (and my 2 children) are

> pointing us to Mito. We are in the process of making appointments

> to see Dr. Shoffner here in Atlanta and Dr. Mark Korson in

> Boston. I have a long history of problems................aches,

> pains, jerks, trmbling, HA, IBS, muscle pain/tiredness, etc I have

> been tested for all sorts of things and was finally diagnosed with

> Fibromyalgia which I personally believe was an answer they gave me

> to " make me feel better " . My 6 yr old son has hemophilia and

> several yrs of leg/knee pain with no apparent reason and my 11 yr

> old daughter has recently began to have severe pain in her legs and

> arms. FINALLY after becoming good friends with a family in Boston

> who have this disease I was able to get my sons hematologist to run

> a metabloic panel on him and found that he has Carnitine defficiency

> so now we are on our way to making some appts

> happen....................lots of paperwork for insurance company,

> as neither doc is on the preferred list!!!!!!!

>

> To make this a bit shorter, I just wanted to say that I am tired of

> hurting and feeling bad and not really feeling like those close to

> me understand or for that matter truly believe me! It will be nice

> to be able to share here and ask questions! I feel like I am alwasy

> trying to convince others and maybe even myself that what I feel is

> real!

>

> Thanks so much!

> In Him,

> Stormy in GA

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Hi Stormy,

Welcome to our little family, which isn't too little anymore. We have quite

a large number of people on the list. I am sorry that you have to be here

but sure am glad that you were able to find us and I hope we can help you

in your journey.

Your symptoms sure sound familiar. Sorry to hear that your children are

also affected by this disease. You are moving in the right direction as far

as doctors go. They are 2 of the finest ones out there. I also see Dr.

Korson in Boston. He is wonderful. I don't know where i would be without

him, nor do I even want to think about it.

I think alot of people get the diagnosis of Fibromyalgia in the beginning

of their search. And some also get diagnosed with M.S., like I did.

I hope that your paperwork with the insurance company won't be too long or

stress you out too much. I know first hand how frustrating insurance

companies can be. Mine was having a fit because I wanted to go out of state

for surgery. Just keep fighting!!!

I totally understand what you mean when you said that you are tired of

hurting, and feeling bad and that people close to you really don't know or

understand or believe what you are going through, but be assured we all

understand what you are feeling and are here for you.

So please share and ask your questions. What you feel is real.......

I also wanted to mention that I have a " Carnitine Deficiency " just like

your son.

Please keep us updated on your progress with the insurance company and when

your appts. will be with the doctors.

Hugs,

Ann-Marie

At 06:52 PM 8/4/2005, you wrote:

>Hi everyone,Just wanted to introduce myself, I am Stormy, and from

>where I stand all signs of my health (and my 2 children) are

>pointing us to Mito. We are in the process of making appointments

>to see Dr. Shoffner here in Atlanta and Dr. Mark Korson in

>Boston. I have a long history of problems................aches,

>pains, jerks, trmbling, HA, IBS, muscle pain/tiredness, etc I have

>been tested for all sorts of things and was finally diagnosed with

>Fibromyalgia which I personally believe was an answer they gave me

>to " make me feel better " . My 6 yr old son has hemophilia and

>several yrs of leg/knee pain with no apparent reason and my 11 yr

>old daughter has recently began to have severe pain in her legs and

>arms. FINALLY after becoming good friends with a family in Boston

>who have this disease I was able to get my sons hematologist to run

>a metabloic panel on him and found that he has Carnitine defficiency

>so now we are on our way to making some appts

>happen....................lots of paperwork for insurance company,

>as neither doc is on the preferred list!!!!!!!

>

>To make this a bit shorter, I just wanted to say that I am tired of

>hurting and feeling bad and not really feeling like those close to

>me understand or for that matter truly believe me! It will be nice

>to be able to share here and ask questions! I feel like I am alwasy

>trying to convince others and maybe even myself that what I feel is

>real!

>

>Thanks so much!

>In Him,

>Stormy in GA

>

>

>

>

>Medical advice, information, opinions, data and statements contained

>herein are not necessarily those of the list moderators. The author of

>this e mail is entirely responsible for its content. List members are

>reminded of their responsibility to evaluate the content of the postings

>and consult with their physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

>automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

[Guest guest]

Ann-Marie,

Thanks for the welcome; sorry I am so long in replying! It has been a

busy week for us. We home school so trying to get back into the swing

of it can be slow at times! I have had a few weird episodes this week

also. I did get the kids pediatrician to go ahead and order a complete

metabolic panel on my daughter and a follow up blood test on my sons

urine test that was low.

I am still working on insurance stuff, but I am determined to have it my

way!!!!!!!!!!!

Thanks so much!

Stormy in GA

~~It is better to be hated for who you are than to be loved for who you

are not~~

Re: new here

Hi Stormy,

Welcome to our little family, which isn't too little anymore. We have

quite

a large number of people on the list. I am sorry that you have to be

here

but sure am glad that you were able to find us and I hope we can help

you

in your journey.

Your symptoms sure sound familiar. Sorry to hear that your children are

also affected by this disease. You are moving in the right direction as

far

as doctors go. They are 2 of the finest ones out there. I also see Dr.

Korson in Boston. He is wonderful. I don't know where i would be without

him, nor do I even want to think about it.

I think alot of people get the diagnosis of Fibromyalgia in the

beginning

of their search. And some also get diagnosed with M.S., like I did.

I hope that your paperwork with the insurance company won't be too long

or

stress you out too much. I know first hand how frustrating insurance

companies can be. Mine was having a fit because I wanted to go out of

state

for surgery. Just keep fighting!!!

I totally understand what you mean when you said that you are tired of

hurting, and feeling bad and that people close to you really don't know

or

understand or believe what you are going through, but be assured we all

understand what you are feeling and are here for you.

So please share and ask your questions. What you feel is real.......

I also wanted to mention that I have a " Carnitine Deficiency " just like

your son.

Please keep us updated on your progress with the insurance company and

when

your appts. will be with the doctors.

Hugs,

Ann-Marie

At 06:52 PM 8/4/2005, you wrote:

>Hi everyone,Just wanted to introduce myself, I am Stormy, and from

>where I stand all signs of my health (and my 2 children) are

>pointing us to Mito. We are in the process of making appointments

>to see Dr. Shoffner here in Atlanta and Dr. Mark Korson in

>Boston. I have a long history of problems................aches,

>pains, jerks, trmbling, HA, IBS, muscle pain/tiredness, etc I have

>been tested for all sorts of things and was finally diagnosed with

>Fibromyalgia which I personally believe was an answer they gave me

>to " make me feel better " . My 6 yr old son has hemophilia and

>several yrs of leg/knee pain with no apparent reason and my 11 yr

>old daughter has recently began to have severe pain in her legs and

>arms. FINALLY after becoming good friends with a family in Boston

>who have this disease I was able to get my sons hematologist to run

>a metabloic panel on him and found that he has Carnitine defficiency

>so now we are on our way to making some appts

>happen....................lots of paperwork for insurance company,

>as neither doc is on the preferred list!!!!!!!

>

>To make this a bit shorter, I just wanted to say that I am tired of

>hurting and feeling bad and not really feeling like those close to

>me understand or for that matter truly believe me! It will be nice

>to be able to share here and ask questions! I feel like I am alwasy

>trying to convince others and maybe even myself that what I feel is

>real!

>

>Thanks so much!

>In Him,

>Stormy in GA

>

>

>

>

>Medical advice, information, opinions, data and statements contained

>herein are not necessarily those of the list moderators. The author of

>this e mail is entirely responsible for its content. List members are

>reminded of their responsibility to evaluate the content of the

postings

>and consult with their physicians regarding changes in their own

treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one

is

>automatically moderated or removed depending on the severity of the

attack.

>

>

>

>

>

[Guest guest]

Ann

Welcome to the group!

laurie

> Hello,

>

> Some of you may know me and most may not. My name is Ann and I'm a mom with

Mito. Diagnosed in 2003 with Mitochondrial Myopathy, it was a bittersweet day:

1. because there is no cure or treatment. 2. I found somewhere I belonged.

>

> For years I had fatigue, pain in my legs and spine, eye flareups; you name it,

I probably had it. I went through the ringer of tests and had been diagnosed in

previous years as a " probable " MS patient. I had the symptoms, just never had

the test to prove it. So in 2002 I met with a new doctor at the MS Clinic who

began looking into rare illnesses. And well, that is how I got my

diagnosis-shortened story, of course.

>

> 2005:

> In April-Following extensive oral surgery, 2 dental offices put me under the

assumption that I was probably misdiagnosed with Mito. My health significantly

improved: making a 180 degree turn. In August-My pulmonologist said prior to

the surgery-the infection could have combined all the Mito symptoms into one

front, causing my health to rapidly decline. He said he was unsure of a

misdiagnosis. But given my current state of health, he did give me a positive

outlook for the future.

>

> So where does this leave me? Knowing I am no worse off mentally than when I

received my initial diagnosis. I know where I started and where the road was

going in April. And hey if my health starts to decline, it isn't like I have

been there before. " Been there, done that " I can say to myself and hopefully

gain some insight I may not have had the last time.

>

> --

> By trade, I am a freelance writer and author. Whatever the opportunity,

Mitochondrial Disease Awareness is one topic that lays at the forefront of what

I believe in.

>

> Guess that's it...for now anyway.

>

> Sincerely,

>

> Ann

>

> All new (www.HeartbeatsForMito.org) featuring 33 children affected by

Mitochondrial Disease

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Ann, I've seen your story in another mito support group, but not the

recent happy ending. I'm very glad to hear your health has improved so much

and truly hope mito was a misdiagnosis for you. I'm just curious about the

diagnosis you received--and you don't have to answer if you'd rather

not---but did you have a muscle biopsy? Did they find deficiencies in the

respiratory chain complexes? Or was the mito diagnosis based on symptoms or

other findings?

Take care,

Barbara

> New here

>

> Hello,

>

> Some of you may know me and most may not. My name is Ann and I'm a mom

with

> Mito. Diagnosed in 2003 with Mitochondrial Myopathy, it was a bittersweet

day: 1.

> because there is no cure or treatment. 2. I found somewhere I belonged.

>

> For years I had fatigue, pain in my legs and spine, eye flareups; you name

it, I

> probably had it. I went through the ringer of tests and had been diagnosed

in

> previous years as a " probable " MS patient. I had the symptoms, just never

had the

> test to prove it. So in 2002 I met with a new doctor at the MS Clinic who

began

> looking into rare illnesses. And well, that is how I got my

diagnosis-shortened story,

> of course.

>

> 2005:

> In April-Following extensive oral surgery, 2 dental offices put me under

the

> assumption that I was probably misdiagnosed with Mito. My health

significantly

> improved: making a 180 degree turn. In August-My pulmonologist said prior

to the

> surgery-the infection could have combined all the Mito symptoms into one

front,

> causing my health to rapidly decline. He said he was unsure of a

misdiagnosis. But

> given my current state of health, he did give me a positive outlook for

the future.

>

> So where does this leave me? Knowing I am no worse off mentally than when

I

> received my initial diagnosis. I know where I started and where the road

was going

> in April. And hey if my health starts to decline, it isn't like I have

been there before.

> " Been there, done that " I can say to myself and hopefully gain some

insight I may

> not have had the last time.

>

> --

> By trade, I am a freelance writer and author. Whatever the opportunity,

> Mitochondrial Disease Awareness is one topic that lays at the forefront of

what I

> believe in.

>

> Guess that's it...for now anyway.

>

> Sincerely,

>

> Ann

>

> All new (www.HeartbeatsForMito.org) featuring 33 children affected by

> Mitochondrial Disease

>

>

>

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[Guest guest]

Welcome Ann!!

So glad that you finally joined us!!

Hugs,

Ann-Marie

At 12:12 PM 8/20/2005, you wrote:

>In April-Following extensive oral surgery, 2 dental offices put me under

>the assumption that I was probably misdiagnosed with Mito. My health

>significantly improved: making a 180 degree turn. In August-My

>pulmonologist said prior to the surgery-the infection could have combined

>all the Mito symptoms into one front, causing my health to rapidly

>decline. He said he was unsure of a misdiagnosis. But given my current

>state of health, he did give me a positive outlook for the future.

--

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[Guest guest]

Barbara-

The muscle biopsy did not show red ragged fibers, but rather it revealed muscle

inflammation/slight deterioration. I did have testing for MELAS, but both common

genes were ruled out. MRA showed postive elevated lactic acid levels in the

right hemisphere of my brain. However we were told (in April) that the massive

infection per dental could have thrown off testing/likely poisoned my entire

system.

However since my August appointment, I have had 2 onsets of instant fatigue and

one strokelike episode. So chances are a misdiagnosis is unlikely. But I try to

stay optimistic.

Take care and if you have any other questions, just ask.

Ann

New here

>

> Hello,

>

> Some of you may know me and most may not. My name is Ann and I'm a mom

with

> Mito. Diagnosed in 2003 with Mitochondrial Myopathy, it was a bittersweet

day: 1.

> because there is no cure or treatment. 2. I found somewhere I belonged.

>

> For years I had fatigue, pain in my legs and spine, eye flareups; you name

it, I

> probably had it. I went through the ringer of tests and had been diagnosed

in

> previous years as a " probable " MS patient. I had the symptoms, just never

had the

> test to prove it. So in 2002 I met with a new doctor at the MS Clinic who

began

> looking into rare illnesses. And well, that is how I got my

diagnosis-shortened story,

> of course.

>

> 2005:

> In April-Following extensive oral surgery, 2 dental offices put me under

the

> assumption that I was probably misdiagnosed with Mito. My health

significantly

> improved: making a 180 degree turn. In August-My pulmonologist said prior

to the

> surgery-the infection could have combined all the Mito symptoms into one

front,

> causing my health to rapidly decline. He said he was unsure of a

misdiagnosis. But

> given my current state of health, he did give me a positive outlook for

the future.

>

> So where does this leave me? Knowing I am no worse off mentally than when

I

> received my initial diagnosis. I know where I started and where the road

was going

> in April. And hey if my health starts to decline, it isn't like I have

been there before.

> " Been there, done that " I can say to myself and hopefully gain some

insight I may

> not have had the last time.

>

> --

> By trade, I am a freelance writer and author. Whatever the opportunity,

> Mitochondrial Disease Awareness is one topic that lays at the forefront of

what I

> believe in.

>

> Guess that's it...for now anyway.

>

> Sincerely,

>

> Ann

>

> All new (www.HeartbeatsForMito.org) featuring 33 children affected by

> Mitochondrial Disease

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

You need to see a Ponseti certified Dr!

artlovr wrote:I just stumpled across this group and was so

glad to have found it. My

little boy was born June 19, 2005 with a club foot on the left and

Metatarsus Adductus on the right. He was in weekly cast for his first

month and up until now the doctor has had us manipulate his foot each

time we change his diaper rather than put him in casts. Two weeks ago

he was back in a cast for a week because the doctor felt it was getting

tighter. I have never read anywhere of the parents doing the

manipulation...has anyone here done it? We just found out that he will

need surgery to cut the heel cord, November 14. Has anyone had

experience with that? I really have no idea what to expect.

Thanks for any information,

[Guest guest]

You need to see a Ponseti certified Dr!

artlovr wrote:I just stumpled across this group and was so

glad to have found it. My

little boy was born June 19, 2005 with a club foot on the left and

Metatarsus Adductus on the right. He was in weekly cast for his first

month and up until now the doctor has had us manipulate his foot each

time we change his diaper rather than put him in casts. Two weeks ago

he was back in a cast for a week because the doctor felt it was getting

tighter. I have never read anywhere of the parents doing the

manipulation...has anyone here done it? We just found out that he will

need surgery to cut the heel cord, November 14. Has anyone had

experience with that? I really have no idea what to expect.

Thanks for any information,

[Guest guest]

Our situation sounds just like yours. My daughter Kolby was born

Aug. 15th with a right club foot and a metatarsus left foot. We are

extremely lucky and live close to Iowa City and were fortunate to be

able to work with Dr. Ponseti. Kolby had 7 casts on her club foot,

as well as a tenotomy, which is cutting the heel cord and two casts

each lasting one week on the left foot. Both of her feet look

absolutely beautiful and are fully corrected. We are now wearing

the FAB with shoes 23/7. I have never heard or read

anything about parents maniuplating the clubfoot. However, before

Dr. Ponseti casted her metatarsus foot he asked if we had been

manipulating it. We let him know that we stretched it often and it

had started to look somewhat better on it's own, however we chose to

go ahead with the casts to ensure it got corrected. I would email

Dr. P or be asking questions to your own doctor about the Ponseti

method. OUr daughter has done really well with all of it. Each new

thing took some adjusting but she has survived and we all have to.

She did way better than I expected with the tenotomy, I gave her

tylenol for a couple days, but she acted as if it didn't really

bother her at all. One thing I have learned on this website and

from Dr. P is to ensure that the foot is completely corrected for

the shoes and bar to work adequately. Good luck!

, 10/16/02, Kolby 8/15/05 RCF

>

> I just stumpled across this group and was so glad to have found

it. My

> little boy was born June 19, 2005 with a club foot on the left and

> Metatarsus Adductus on the right. He was in weekly cast for his

first

> month and up until now the doctor has had us manipulate his foot

each

> time we change his diaper rather than put him in casts. Two weeks

ago

> he was back in a cast for a week because the doctor felt it was

getting

> tighter. I have never read anywhere of the parents doing the

> manipulation...has anyone here done it? We just found out that he

will

> need surgery to cut the heel cord, November 14. Has anyone had

> experience with that? I really have no idea what to expect.

>

> Thanks for any information,

>

>

[Guest guest]

Our situation sounds just like yours. My daughter Kolby was born

Aug. 15th with a right club foot and a metatarsus left foot. We are

extremely lucky and live close to Iowa City and were fortunate to be

able to work with Dr. Ponseti. Kolby had 7 casts on her club foot,

as well as a tenotomy, which is cutting the heel cord and two casts

each lasting one week on the left foot. Both of her feet look

absolutely beautiful and are fully corrected. We are now wearing

the FAB with shoes 23/7. I have never heard or read

anything about parents maniuplating the clubfoot. However, before

Dr. Ponseti casted her metatarsus foot he asked if we had been

manipulating it. We let him know that we stretched it often and it

had started to look somewhat better on it's own, however we chose to

go ahead with the casts to ensure it got corrected. I would email

Dr. P or be asking questions to your own doctor about the Ponseti

method. OUr daughter has done really well with all of it. Each new

thing took some adjusting but she has survived and we all have to.

She did way better than I expected with the tenotomy, I gave her

tylenol for a couple days, but she acted as if it didn't really

bother her at all. One thing I have learned on this website and

from Dr. P is to ensure that the foot is completely corrected for

the shoes and bar to work adequately. Good luck!

, 10/16/02, Kolby 8/15/05 RCF

>

> I just stumpled across this group and was so glad to have found

it. My

> little boy was born June 19, 2005 with a club foot on the left and

> Metatarsus Adductus on the right. He was in weekly cast for his

first

> month and up until now the doctor has had us manipulate his foot

each

> time we change his diaper rather than put him in casts. Two weeks

ago

> he was back in a cast for a week because the doctor felt it was

getting

> tighter. I have never read anywhere of the parents doing the

> manipulation...has anyone here done it? We just found out that he

will

> need surgery to cut the heel cord, November 14. Has anyone had

> experience with that? I really have no idea what to expect.

>

> Thanks for any information,

>

>

[Guest guest]

FAB stands for Foot Abduction Brace, it's also commonly known as a Dennis Brown

Bar (DBB). The new variety is becoming known as an AFO although

that is confusing because there's another type of brace known as an AFO that is

not good for club foot.

s.

what does FAB stand for? Thanks for the information!

, 06/19/05 LCF

---

[Guest guest]

FAB stands for Foot Abduction Brace, it's also commonly known as a Dennis Brown

Bar (DBB). The new variety is becoming known as an AFO although

that is confusing because there's another type of brace known as an AFO that is

not good for club foot.

s.

what does FAB stand for? Thanks for the information!

, 06/19/05 LCF

---

[Guest guest]

is your son in the FAB brace to hold on to the correction he had before?

Or is he just out of casts and you stretch him every day? This is not making

sense to me. The heel cord should not be lengthened after he's been out of

casts for a while, that should have been part of the casting process.

s.

New here

I just stumpled across this group and was so glad to have found it. My

little boy was born June 19, 2005 with a club foot on the left and

Metatarsus Adductus on the right. He was in weekly cast for his first

month and up until now the doctor has had us manipulate his foot each

time we change his diaper rather than put him in casts. Two weeks ago

he was back in a cast for a week because the doctor felt it was getting

tighter. I have never read anywhere of the parents doing the

manipulation...has anyone here done it? We just found out that he will

need surgery to cut the heel cord, November 14. Has anyone had

experience with that? I really have no idea what to expect.

Thanks for any information,