new member

[Guest guest]

le,

I think most of us have had to deal with doctors that won't listen at

one time or another! Many of us have even changed doctors, until we

found one that would listen! Good luck to you on that!

We are planning to be at the convention this summer. Just working on

the funds to get there!

Blessings,

Carmen, mom to Storm age 8y8m, 50 # and 48 inches

[Guest guest]

hi gabrielle!!

sorry i am responding so late after your intial post, its been a

little crazy here!! i just wanted to welcome you to this

wonderful " family " !! this is such a great group of caring and

supporting parents!! luckly my ped. is very good, but i did have

trouble this winter when christopher got the stomach bug and i took

him to the er, the dr told me i was just worringto much and sent us

home!! luckly i have this group to ask questions of and they

pointed me in the right direction and i wasw able to get the carbs

and fluids into him and not have to go back to the hospital. next

time i will be more demanding!! good luck and feel free to email me

any time at jlcals2003 @yahoo.com (no space after 2003).

jodie (one of many on here)

(nicholas-6 nonrss, christopher-3 rss 23lbs 33 " periactin, johnathon-

10m nonrss)

[Guest guest]

Hi Livia,

You'll probably be told by your ortho when you're ready for surgery.

Then you'll go back to see your surgeon for a pre-op visit. I only

saw mine about 2 years before my surgeon, then exactly one week pre-

op. At that visit, he took xrays, molds, measurements and

photographs, lots of them. I didn't see him the day of the surgery,

just heard his kindly voice saying hi as they wheeled me into the OR.

One thing you'll find is that schedules are frequently adjusted, for

various reasons (in my case, they closed 8 ORs in Toronto, and my

surgeon had to scramble for openings, then a year later, SARS hit).

I'd check on how closely your ortho and surgeon talk. My ortho was

totally unaware that the waiting time for my surgeon had grown from 6

months to 8-9 months, and that was before the OR closure crunch. If

you're like me, you want to have a bit of control over the scheduling

so that you can plan some of your work around it. I made sure I kept

in touch with my surgeon to get a potential date, and then worked

with my ortho to firstly make sure he'd be able to get me ready in

time, and secondly, to book enough frequency of appointments to make

that happen (I got told in June that I'd have surgery in August, so

treatment had to be stepped up to every 4 weeks instead of 8 weeks).

I didn't want to be treated like a kid patient, I'm an adult and I

have questions and a need to be involved in scheduling!

Hope that helps. Cammie here is in lower Alabama, she's a bit older

than you (56 going on 57 when she had her lower jaw surgery 2 years

ago), and I'm sure she'll be curious to know who your surgeon is!

> Hi everyone. I wanted to introduce myself. My name is Livia and I

am 54 and living in Alabama. I have had my braces on since right

before Thanksgiving (2003) and was told at the time it would be 8-12

months and then I'd be ready for surgery. My orthodontist said last

month that he thinks it'll be 4-6 more months before my teeth are

ready, so now I'm thinking January or February. From reading the

other posts, having your surgery pushed forward doesn't sound all

that uncommon. I only hope I'm OK for my daughter's wedding in May

of '05. The OD says I'll be in braces probably around a year after

surgery too. Maybe he was just being overly cautious, I hope it's

not really that long.

> I've only talked to the Oral Surgeon one time and that was before I

even got my braces on. Should I be going to see him also? I figured

I'd wait until the OD told me to. What have y'all done?

[Guest guest]

Hi Livia,

You'll probably be told by your ortho when you're ready for surgery.

Then you'll go back to see your surgeon for a pre-op visit. I only

saw mine about 2 years before my surgeon, then exactly one week pre-

op. At that visit, he took xrays, molds, measurements and

photographs, lots of them. I didn't see him the day of the surgery,

just heard his kindly voice saying hi as they wheeled me into the OR.

One thing you'll find is that schedules are frequently adjusted, for

various reasons (in my case, they closed 8 ORs in Toronto, and my

surgeon had to scramble for openings, then a year later, SARS hit).

I'd check on how closely your ortho and surgeon talk. My ortho was

totally unaware that the waiting time for my surgeon had grown from 6

months to 8-9 months, and that was before the OR closure crunch. If

you're like me, you want to have a bit of control over the scheduling

so that you can plan some of your work around it. I made sure I kept

in touch with my surgeon to get a potential date, and then worked

with my ortho to firstly make sure he'd be able to get me ready in

time, and secondly, to book enough frequency of appointments to make

that happen (I got told in June that I'd have surgery in August, so

treatment had to be stepped up to every 4 weeks instead of 8 weeks).

I didn't want to be treated like a kid patient, I'm an adult and I

have questions and a need to be involved in scheduling!

Hope that helps. Cammie here is in lower Alabama, she's a bit older

than you (56 going on 57 when she had her lower jaw surgery 2 years

ago), and I'm sure she'll be curious to know who your surgeon is!

> Hi everyone. I wanted to introduce myself. My name is Livia and I

am 54 and living in Alabama. I have had my braces on since right

before Thanksgiving (2003) and was told at the time it would be 8-12

months and then I'd be ready for surgery. My orthodontist said last

month that he thinks it'll be 4-6 more months before my teeth are

ready, so now I'm thinking January or February. From reading the

other posts, having your surgery pushed forward doesn't sound all

that uncommon. I only hope I'm OK for my daughter's wedding in May

of '05. The OD says I'll be in braces probably around a year after

surgery too. Maybe he was just being overly cautious, I hope it's

not really that long.

> I've only talked to the Oral Surgeon one time and that was before I

even got my braces on. Should I be going to see him also? I figured

I'd wait until the OD told me to. What have y'all done?

[Guest guest]

Thanks for the input, . I do know that the orthodontist and

oral surgeon talk a lot. The OD told me last visit that he and the

surgeon meet several times a week to discuss cases they are working

on, so I feel pretty good about that part. I'm already seeing the OD

every 4 weeks. It's been like that from the start. I believe I'll

ask him what the waiting period for scheduling surgery is, though. I

hadn't thought about that. Did you (or anyone else) donate your own

blood in case you needed transfusions?

I'm in Birmingham, so I'm sure the surgeon is not one Cammie is

familiar with. Didn't she have her surgery in Mobile?

Anyone else out there in the Birmingham area?

> > Hi everyone. I wanted to introduce myself. My name is Livia and

I

> am 54 and living in Alabama. I have had my braces on since right

> before Thanksgiving (2003) and was told at the time it would be 8-

12

> months and then I'd be ready for surgery. My orthodontist said

last

> month that he thinks it'll be 4-6 more months before my teeth are

> ready, so now I'm thinking January or February. From reading the

> other posts, having your surgery pushed forward doesn't sound all

> that uncommon. I only hope I'm OK for my daughter's wedding in May

> of '05. The OD says I'll be in braces probably around a year

after

> surgery too. Maybe he was just being overly cautious, I hope it's

> not really that long.

> > I've only talked to the Oral Surgeon one time and that was before

I

> even got my braces on. Should I be going to see him also? I

figured

> I'd wait until the OD told me to. What have y'all done?

[Guest guest]

Thanks for the input, . I do know that the orthodontist and

oral surgeon talk a lot. The OD told me last visit that he and the

surgeon meet several times a week to discuss cases they are working

on, so I feel pretty good about that part. I'm already seeing the OD

every 4 weeks. It's been like that from the start. I believe I'll

ask him what the waiting period for scheduling surgery is, though. I

hadn't thought about that. Did you (or anyone else) donate your own

blood in case you needed transfusions?

I'm in Birmingham, so I'm sure the surgeon is not one Cammie is

familiar with. Didn't she have her surgery in Mobile?

Anyone else out there in the Birmingham area?

> > Hi everyone. I wanted to introduce myself. My name is Livia and

I

> am 54 and living in Alabama. I have had my braces on since right

> before Thanksgiving (2003) and was told at the time it would be 8-

12

> months and then I'd be ready for surgery. My orthodontist said

last

> month that he thinks it'll be 4-6 more months before my teeth are

> ready, so now I'm thinking January or February. From reading the

> other posts, having your surgery pushed forward doesn't sound all

> that uncommon. I only hope I'm OK for my daughter's wedding in May

> of '05. The OD says I'll be in braces probably around a year

after

> surgery too. Maybe he was just being overly cautious, I hope it's

> not really that long.

> > I've only talked to the Oral Surgeon one time and that was before

I

> even got my braces on. Should I be going to see him also? I

figured

> I'd wait until the OD told me to. What have y'all done?

[Guest guest]

Hi Livia,

I asked my surgeon about donating blood, and he said no, it's not

necessary. I have a friend who works for the Canadian Blood Service,

who also had this surgery, and she says that by donating so much

blood close to the surgery, you can actually cause a need for it.

If the surgeon is efficient, you'll be in and out of there in no time

and it won't be necessary. My surgery lasted 3.5 hours.

I personally have no fear of needing blood and using someone else's

donation. My father received a donation during emergency surgery last

spring, neither he nor family were in a position to make any

decisions about it (we only found out later). We are immensely

grateful to the individual who donated the blood as it was put to

good use. They saved his life, as he had only a couple of hours to

live without the surgery.

> Thanks for the input, . I do know that the orthodontist and

> oral surgeon talk a lot. The OD told me last visit that he and the

> surgeon meet several times a week to discuss cases they are working

> on, so I feel pretty good about that part. I'm already seeing the

OD

> every 4 weeks. It's been like that from the start. I believe I'll

> ask him what the waiting period for scheduling surgery is, though.

I

> hadn't thought about that. Did you (or anyone else) donate your

own

> blood in case you needed transfusions?

>

> I'm in Birmingham, so I'm sure the surgeon is not one Cammie is

> familiar with. Didn't she have her surgery in Mobile?

>

> Anyone else out there in the Birmingham area?

[Guest guest]

Hi Livia,

I asked my surgeon about donating blood, and he said no, it's not

necessary. I have a friend who works for the Canadian Blood Service,

who also had this surgery, and she says that by donating so much

blood close to the surgery, you can actually cause a need for it.

If the surgeon is efficient, you'll be in and out of there in no time

and it won't be necessary. My surgery lasted 3.5 hours.

I personally have no fear of needing blood and using someone else's

donation. My father received a donation during emergency surgery last

spring, neither he nor family were in a position to make any

decisions about it (we only found out later). We are immensely

grateful to the individual who donated the blood as it was put to

good use. They saved his life, as he had only a couple of hours to

live without the surgery.

> Thanks for the input, . I do know that the orthodontist and

> oral surgeon talk a lot. The OD told me last visit that he and the

> surgeon meet several times a week to discuss cases they are working

> on, so I feel pretty good about that part. I'm already seeing the

OD

> every 4 weeks. It's been like that from the start. I believe I'll

> ask him what the waiting period for scheduling surgery is, though.

I

> hadn't thought about that. Did you (or anyone else) donate your

own

> blood in case you needed transfusions?

>

> I'm in Birmingham, so I'm sure the surgeon is not one Cammie is

> familiar with. Didn't she have her surgery in Mobile?

>

> Anyone else out there in the Birmingham area?

[Guest guest]

Hi Jill,

First off, welcome to the group! I don't have any insight for you about the

s as my daughter, Olivia, is in the Markells and has never had a

problem. I'm sure you will get some input from other families that do use the

s.

I did want to ask how close you are to Pittsburgh? We live about 75 miles north

of Pittsburgh. I was also wondering if I may ask what doctor Sophia sees at

Children's? I'm also curious how long he/she has been using the Ponseti method?

I'm asking because when Olivia was born we were not aware of any doctor's at

Children's using the method. The first time we went to Iowa in April of 2001

Dr. Ponseti had mentioned to us that there had recently been a few doctors from

Pittsburgh out to see him and observe the method. We still see Dr. Ponseti and

are not interested in switching doctors, but it would be good to know about a

" local " doctor if we learn of any other patients in the area.

Thanks,

Jen & Livie (10-18-01 severe left clubfoot)

New Member

Hi, I'm new to the group. My daughter Sophia is 15 months old with

unlilateral club foot (right foot). Her doctor at Children's Hospital

in Pittsburgh is doing the Ponseti method and she is out of casts and

in the DBB. She has the Markell shoes and seems to get out of them

every time! No matter how tight I make the strap and laces. I am now

thinking they are too wide for her and that is how she wiggles her one

foot out. I was looking at the website and am wondering if

anyone has had any experience with those types of shoes? A couple of

people on that site had said they were better for Houdini kids, like

my Sophie. Any insite??

Thanks!

Jill

[Guest guest]

Hi Jill,

The web site is http://www.mdorthopaedics.org/default.html

We had the 's (Ponseti brace) and love it. It worked really

well and was comfortable for baby and fairly easy to get on. The only

problem is it can sometimes take a while to get because makes them

all individually and sometimes insurance won't pay for them.

There is a tips and tricks file in the files section that is full of

great info for the Houdini child. Its called FAB Doc.

[Guest guest]

Hi, Jill-

Welcome to our group!

I have just a few questions to better understand Sophia's situation.

Since she's 15 months old.....has she been in the foot abduction

brace for a while and just now started having problems keeping her

foot in? Or if she recently started with the brace for the first

time, please tell us about her treatment for the first year (i.e.

did you switch doctors, did she have other braces first, did she

relapse etc.).

Have you seen the tips and tricks for the FAB (DBB) document? Look

in the files section on this website, under the bracing folder

(there's lots of other info there too!).

Are you 100% confident that her foot is corrected? Which foot is

she pulling out of the brace- her clubfoot or non-clubfoot?

Are the inside edges of the heels of the shoes at a distance equal

to the width of her shoulders? If the brace is too narrow, she'll

be able to more easily pull the foot out (and it can be

uncomfortable).

Here's another website that might help:

http://members.tripod.com/ponseti_links-ivil

At 15 months old, if her foot is corrected and the brace is set up

properly, you shouldn't have any problems keeping Sophia's foot in

the Markell shoes, unless she has an a-typical clubfoot or other

issues that make her foot a " complicated " one.

I hope we can help you troubleshoot the issues!

Regards,

& (3-16-00, left clubfoot)

>

>

> Hi, I'm new to the group. My daughter Sophia is 15 months old with

> unlilateral club foot (right foot). Her doctor at Children's

Hospital

> in Pittsburgh is doing the Ponseti method and she is out of casts

and

> in the DBB. She has the Markell shoes and seems to get out of them

> every time! No matter how tight I make the strap and laces. I am

now

> thinking they are too wide for her and that is how she wiggles her

one

> foot out. I was looking at the website and am wondering

if

> anyone has had any experience with those types of shoes? A couple

of

> people on that site had said they were better for Houdini kids,

like

> my Sophie. Any insite??

>

> Thanks!

>

> Jill

[Guest guest]

Sophie was diagnosed at birth by her pediatrician who at that point

said he wanted to wait until she was six months old to see if it

self corrected, she has a moderate club on one foot. I had no idea

what to do or I would have insisted on treatment earlier. I was told

to take her to an orthopedic doctor at six months who then

recommended me to Children's Hospital in Pittsburgh, who then

decided we should wait until she was a year old before we did

anything such as casting. At a year (December 2004) they started a

series of casts, one a week and then she had the heel puncture to

lenthen the tendon in January and then another cast for 4 more

weeks. She just started the Denis Browne bar in February. At first

she was ok with the shoes they were very small, size 1 1/2, but the

doctor said she would grow out of them very soon. Her toes were at

the very edge. At the beginning of March we called the brace company

and ordered a new pair. He asked me if I wanted a size 2 or 2 1/2, I

had no idea. He gave me the 2 1/2. At the time I thought they were

good, much easier to get on, but after a week, the bar became

stripped on her non-clubbed side and kept coming loose, so we had to

glue it on permanently. Then she started getting her non clubbed

foot out of the shoe. We have taken the tongue off and tried to

tighten as tight as we can without causing pain to her, but she

still wiggles that foot out in a matter of minutes. They just seem

too wide. We even glued some rubber into the backs of the shoes and

she still gets out. I don't know. I know I won't be going back to

that brace company. I was just wondering about the shoes,

as they seem to look more comfortable and harder to get out of. If

they are no good then I am going to measure her feet myself from the

Markell website and order the shoes with the insert. I am also going

to be asking her doctor alot of questions on my next visit after

coming to this group. None of the doctors that have seen her have

really discussed the treatment at length. The only time I even heard

Ponseti was when her doctor called them Ponseti shoes. I really want

to know if he was using the Ponseti method or not. They all acted

like this was no big deal. Her foot was just a little clubbed. We'll

cast it and she'll have to wear this brace for 3 months full time

and 2 years at night. Now I realize it is a big deal and I want

answers.

> >

> >

> > Hi, I'm new to the group. My daughter Sophia is 15 months old

with

> > unlilateral club foot (right foot). Her doctor at Children's

> Hospital

> > in Pittsburgh is doing the Ponseti method and she is out of

casts

> and

> > in the DBB. She has the Markell shoes and seems to get out of

them

> > every time! No matter how tight I make the strap and laces. I am

> now

> > thinking they are too wide for her and that is how she wiggles

her

> one

> > foot out. I was looking at the website and am wondering

> if

> > anyone has had any experience with those types of shoes? A

couple

> of

> > people on that site had said they were better for Houdini kids,

> like

> > my Sophie. Any insite??

> >

> > Thanks!

> >

> > Jill

[Guest guest]

Donna

I would suggest seeing your primary care doc about the headaches and

tooth pain, or even the dentist. It sounds like it could be a sinus

problem.

Migraines are common with mito, and many take Vit. B2 to prevent them.

laurie

> Hi everyone,

>

> I posted requesting doctor info a few days ago. Thanks for the

> replies. I didn't have time to introduce myself though at that time.

>

> I am 40 years old, married and the mother of three children. My

> stepson is now 18 years old and not living at home anymore. My son

> Craig, who has unspecified mito (we think) is 8 years old, and my son

> Dalton, who may have mito but is mild and undiagnosed so far, is 6

> years old. Craig had normal development until two years old then

> started regressing. He is still walking and talking (thank God), but

> with much difficulty many days. He is doing much better since being on

> the mito cocktail. Dalton is on Levocarnitine, Co Q10 and other mito

> supplements just like Craig, and it has helped his milder issues a lot

> too.

>

> I started having strange symptoms about a year ago. It started (like

> Craig) with being unable to walk without falling over a couple of

> times late at night (ataxia). I had some trouble with unusual fatigue

> occassionally as well. In the past few months, I have been acquiring

> new symtoms all the time- pins and needles, numbness, pain,

> spasticity, muscle cramps and spasms, dizziness, etc.

>

> I have a new symptom (maybe?) that I wonder if anyone else has. Or

> maybe I need to get it checked out for another source of the problem?

> I am having jaw pain and headaches all this week. The headaches are

> expecially when I move a lot or bend over (it used to be just the

> dizziness, but now it really hurts). I have had horrible allergies

> all my life, but never sinus headaches. My sinuses don't seem full

> enough to explain all this, and I don't feel like I have an infection

> other than my teeth hurting.

>

> I have had tingling in the roof of my mouth before, so I wonder if

> this is just more neuropathic stuff?

>

> Or am I just grinding my teeth at night without knowing it?

>

> I hate running to more doctors than necessary if it's just more weird

> mito stuff.

>

> Thanks for your help.

>

> Donna H.

>

>

>

>

>

>

>

>

> 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]

Donna, I agree with Laurie that you should mention it to the doctor.

It takes very little inflammation in the jaw area to create pain into

the ear and skull. The space available for fluid is just so small

that the pressure has nowhere else to go. Therefore, you may have TMJ

from arthritis or teeth ginding while you sleep or sinus

headache...both of which are extremely common for non-Mito people as

well. It's always good to tell a doc if it's bothering you that

much. There may be a simple solution.

Good luck,

bug

[Guest guest]

Hi Donna- I'm fairly new here too. Guess you should mention the

headaches to your doctor. I used to have horrible migraines, but they

have stopped in the past few years (guess I should knock on wood LOL)

As with many others here, your symptoms all seem familiar. Glad you

joined the group, sorry that you have to be here.

Marla

[Guest guest]

Donna,

Welcome to . My name is and I am one of the moderators

on . I am also Laurie on the lists younger sister.

Sorry it appears you have a need, but glad to have you join the

" family " . Please feel free to ask questions and we will answer as we

are able depending on each of or individual health concerns at any given

moment. They tend to wax and wane a bit.

donna henderson wrote:

>Hi everyone,

>

>I posted requesting doctor info a few days ago. Thanks for the

>replies. I didn't have time to introduce myself though at that time.

>

>I am 40 years old, married and the mother of three children. My

>stepson is now 18 years old and not living at home anymore. My son

>Craig, who has unspecified mito (we think) is 8 years old, and my son

>Dalton, who may have mito but is mild and undiagnosed so far, is 6

>years old. Craig had normal development until two years old then

>started regressing. He is still walking and talking (thank God), but

>with much difficulty many days. He is doing much better since being on

>the mito cocktail. Dalton is on Levocarnitine, Co Q10 and other mito

>supplements just like Craig, and it has helped his milder issues a lot

>too.

>

>I started having strange symptoms about a year ago. It started (like

>Craig) with being unable to walk without falling over a couple of

>times late at night (ataxia). I had some trouble with unusual fatigue

>occassionally as well. In the past few months, I have been acquiring

>new symtoms all the time- pins and needles, numbness, pain,

>spasticity, muscle cramps and spasms, dizziness, etc.

>

>I have a new symptom (maybe?) that I wonder if anyone else has. Or

>maybe I need to get it checked out for another source of the problem?

>I am having jaw pain and headaches all this week. The headaches are

>expecially when I move a lot or bend over (it used to be just the

>dizziness, but now it really hurts). I have had horrible allergies

>all my life, but never sinus headaches. My sinuses don't seem full

>enough to explain all this, and I don't feel like I have an infection

>other than my teeth hurting.

>

>I have had tingling in the roof of my mouth before, so I wonder if

>this is just more neuropathic stuff?

>

>Or am I just grinding my teeth at night without knowing it?

>

>I hate running to more doctors than necessary if it's just more weird

>mito stuff.

>

>Thanks for your help.

>

>Donna H.

>

>

>

>

>

>

>

>

>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]

Hello Darlene,

My name is Janet Sample. My husband, son and I live 5 miles from Brillion. My

family is from Antigo but my mother is from Wausau. Our family has MELAS. My

sister had moved to Manitowoc in 1995 from Twin Lakes near Kenosha. When she

went into a 4 day coma again in 1996 after one in 1994 her doctor found a doctor

in Milwaukee who diagnosed her with MELAS. Myself and my son were diagnosed

thru a blood test. My nephew who is now 14 will be tested if his sickness

problems require documentation to get proper treatment.

I just wanted to mention that there is a physician at Marshfield Clinic named

Laurel Rudolph-Kniech. I have not personally seen her in a professional setting

as a physician and the last time I met her was at a family reunion in 1996. She

specializes in family practice and sports medicine according to the Marshfield

Clinic website. She got her license in 1991 I believe. The way I know her is

she is my maternal grandfathers brothers daughter. She is well aware of MELAS.

My mother died in 1988 and then my sister in 1996. We believe my mother had

MELAS also. After my sister died in 1996 my cousin's wife did a study of MELAS

thru Marshfield Clinic. My aunt was a nurse at Wausau hospital who was in

charge of training nurses and she also did a lot of research. My aunt's husband

was my mothers brother so their family is not affected by MELAS which is

predominatly passed on by the mother but they took an interest in this.

Myself and my son have very mild symptoms, me diabetes where my blood sugar goes

up with exercise, slight hearing loss, and occasional constipation. My son has

dismobility that caused him severe constipation before going on Carniqgel. We

both have fatique.

Janet

New member

Hello everyone. My name is Darlene and I was diagnosed with

Mitochondrial Cytopathy in April at the Mayo Clinic in Rochester, MN.

I'm 34 years old and living in Chippewa Falls, WI. I write books for

young and middle readers.

I don't know very much about this disease and whenever I look

something up, my brain starts to hurt from all the medical terms.

I take several supplements and they seemed to work at first but lately

I've been " dragging " again. People tell me a lot that I'm " just

depressed " .

I look forward to hearing from and talking to people who really

understand what it's like to have no energy.

Darlene

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]

Which Marshfield Clinic? I usually go to the one in Eau Claire, my husband

goes to the Riverview Center and my mom goes to Chippewa. I also had to go to

the clinic in Marshfield to see a neuro-opthamologist because there aren't any

in the Eau Claire/Chippewa Falls area.

Darlene

[Guest guest]

Wanda,

Welcome to Mitoldies. We have another member that lives in Australia,

so you aren't alone after all. She has been on no mail for quite a

while, but maybe if she feels up to it she can contact you. She has had

quite a few personal challenges in the last couple of years but is a

great gal. Her name is Tara.

Even if Tara isn't reachable right now, the rest of us will do our best

to support you in any way we can.

wandaramsdell wrote:

>Hello,

>

>My name is Wanda Ramsdell and I live in Australia. I was diagnosed in

>September 1999 with Mitochondrial cytopathy at the age of 31 after

>months of tests and hospitalisation.

>Since then I have had more muscle pathology which is consistent with a

>mitochondrial cytopathy with numerous COX negative fibres and ragged

>red fibres. I have been getting progressively worse over the last few

>months and have tried so many different pain management programs etc

>that I am now needing more help from the likes of your organisation. I

>would love to get in touch with a support group or something as I have

>no access to one in Australia.

>My story attached to my disease is complicated and it would be great to

>speak to others who have tried things that I may not of thought of. If

>you could reply with some information that would help me I would be

>very grateful.

>Yours sincerely

>Wanda Ramsdell

>

>

>

>

>

>

>

>

>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]

Wanda

Welcome to the group. You might want to ask some specific questions,

since mito is so overwhelming in scope and the symptoms are so

different one member to another. I'm guessing that pain management is

a current issue. Are you taking the mito cocktail?

laurie

> Hello,

>

> My name is Wanda Ramsdell and I live in Australia. I was diagnosed in

> September 1999 with Mitochondrial cytopathy at the age of 31 after

> months of tests and hospitalisation.

> Since then I have had more muscle pathology which is consistent with a

> mitochondrial cytopathy with numerous COX negative fibres and ragged

> red fibres. I have been getting progressively worse over the last few

> months and have tried so many different pain management programs etc

> that I am now needing more help from the likes of your organisation. I

> would love to get in touch with a support group or something as I have

> no access to one in Australia.

> My story attached to my disease is complicated and it would be great to

> speak to others who have tried things that I may not of thought of. If

> you could reply with some information that would help me I would be

> very grateful.

> Yours sincerely

> Wanda Ramsdell

>

>

>

>

>

>

>

>

> 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 Wanda,

I would also like to welcome you to the group, my husband has cousins that

live in Australia I am not sure where though.

Donna K

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

> Wanda

>

> Welcome to the group. You might want to ask some specific questions,

> since mito is so overwhelming in scope and the symptoms are so

> different one member to another. I'm guessing that pain management is

> a current issue. Are you taking the mito cocktail?

>

> laurie

>

>

> > Hello,

> >

> > My name is Wanda Ramsdell and I live in Australia. I was diagnosed in

> > September 1999 with Mitochondrial cytopathy at the age of 31 after

> > months of tests and hospitalisation.

> > Since then I have had more muscle pathology which is consistent with a

> > mitochondrial cytopathy with numerous COX negative fibres and ragged

> > red fibres. I have been getting progressively worse over the last few

> > months and have tried so many different pain management programs etc

> > that I am now needing more help from the likes of your organisation. I

> > would love to get in touch with a support group or something as I have

> > no access to one in Australia.

> > My story attached to my disease is complicated and it would be great to

> > speak to others who have tried things that I may not of thought of. If

> > you could reply with some information that would help me I would be

> > very grateful.

> > Yours sincerely

> > Wanda Ramsdell

> >

> >

> >

> >

> >

> >

> >

> >

> > 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 Wanda,

Welcome to the group. I've been in pain all my life, since age 8 (I'm

42 now). Of course, all of us are different and will respond to

different things. For me, pacing has been the most important thing. I

have organized my life so that I can find a balance between avoiding

activities that aggravate my pain (which is just about everything) and

doing as much as I can so that I maintain as much strength as I can.

If I rest too much, my pain gets worse and my energy decreases. If I

don't rest enough, my pain gets much worse and my energy decreases. If

I find the place in the middle, my pain level stays at the best it can

be--which is still chronic, but more workable.

The other thing that has helped me is a particular type of

meditation--*not* something that I would call pain management.

Although pain management centers often offer meditation, it tends to

be very watered-down. The type of meditation that I have been doing

for 21 years is not about getting rid of pain. (For me, getting rid of

pain doesn't seem to be possible anyway.) Instead, it's about learning

to become aware of the way one reacts to pain. Believe it or not, as

bad as the pain is, I have found that my reaction to it can cause more

difficulty than the actual pain and illness itself. Meditation has

taught me to react differently and because of that, to find peace even

with significant pain. Actually, pain is just one thing the meditation

deals with. It's a way of finding peace no matter what one is facing.

This type of meditation is not easy. It takes a fair amount of

practice. But for me, it has allowed me to find some joy and happiness

even with constant pain and significant disability.

If you want resources for learning this type of meditation, let me

know and I'll post them. Or, you can email me privately. (I don't

recommend trying to learn this from books!). And, if I don't hear from

you, I won't be insulted. I realize that this type of thing isn't

something everyone is interested in.

Best,

Shayna

>

> Hello,

>

> My name is Wanda Ramsdell and I live in Australia. I was diagnosed in

> September 1999 with Mitochondrial cytopathy at the age of 31 after

> months of tests and hospitalisation.

> Since then I have had more muscle pathology which is consistent with a

> mitochondrial cytopathy with numerous COX negative fibres and ragged

> red fibres. I have been getting progressively worse over the last few

> months and have tried so many different pain management programs etc

> that I am now needing more help from the likes of your organisation. I

> would love to get in touch with a support group or something as I have

> no access to one in Australia.

> My story attached to my disease is complicated and it would be great to

> speak to others who have tried things that I may not of thought of. If

> you could reply with some information that would help me I would be

> very grateful.

> Yours sincerely

> Wanda Ramsdell

>

[Guest guest]

As a side note, I use some of the Lamaze mind and breathing

techniques I learned before the birth of my first child to minimize

pain and stress. Like full body relaxation and finding a " happy

place " to center on (visualizing somewhere you'd enjoy being).

Take care,

RH

> >

> > Hello,

> >

> > My name is Wanda Ramsdell and I live in Australia. I was

diagnosed in

> > September 1999 with Mitochondrial cytopathy at the age of 31

after

> > months of tests and hospitalisation.

> > Since then I have had more muscle pathology which is consistent

with a

> > mitochondrial cytopathy with numerous COX negative fibres and

ragged

> > red fibres. I have been getting progressively worse over the last

few

> > months and have tried so many different pain management programs

etc

> > that I am now needing more help from the likes of your

organisation. I

> > would love to get in touch with a support group or something as I

have

> > no access to one in Australia.

> > My story attached to my disease is complicated and it would be

great to

> > speak to others who have tried things that I may not of thought

of. If

> > you could reply with some information that would help me I would

be

> > very grateful.

> > Yours sincerely

> > Wanda Ramsdell

> >

>

[Guest guest]

hi,

i have just recently been diagnosed with mito after thinking i had ms

for 20 years.

my two older sisters also have mito.

i have complex 1 and complex 111 defects. i have a lot of learning to

do and need all the support i can get.

right now i am have pain in my right arm that goes from my arm pit

down to and through my elbow and beyond. i have been in physical

therapy for a while and it just gets worse not better. i think it

actually irritates it.

i went to dr. yesterday and he told me to stop it. and i have, gladly.

is there any way to manage the pain? it is not constant, just certain

ways i move the arm.

any help will be appreciated.

thanks,

judy