Re: New to group-not to Mito

January 7, 1996

Michele,

Never feel that you are rambling. You are sharing. Sharing both your feelings and your anger, which is why we are all here.

I know that I would not have coped without the support and caring nature behind people in such support groups as this one so share your frustration's with us as much as you wish and as often as you wish.

Remember Michele 'Even this will have to pass'.

Hugs,

.

New to group-not to Mito

Hello everyone,My name is and I have a 9 year old daughter who was diagnosed with Mito/CVS/GERD. The CVS and GERD diagnosis' were just made yesterday, although it was talked about 3 years ago. Her Mito diagnosis came the week before Christmas. I had to let it go until after the holidays and now is time to move ahead. We, like so many others; have been through the gambet of testing and misdiagnoses. Everything from Munchhousen by Proxy to it's all in our heads. We are left with Mito, yet it's unclassified. Nikki's issues are with fatigue or illness-causing fasting-leading to vomiting and dehydration to hospitalization, 13 times so far. Now, on top of all the other meds she takes we now will be taking Elivil and Prevaced along with Carnitor,coQ10,Vit C & E, B1,B2. I cannot get the Carnitor covered by insurance and I'm paying close to $400.00 a month for everything. It just adds insult to injury...Sorry to sound so down, I just am today. We're tired. As a family- we're tired. I am so glad that someone on the FOD website suggested this group. I really need to listen to and learn from and share with someone else who understands. I feel so alone in all this. People look at you like you're making this up-Mito Disease? They've never heard of it so it must not be real... Sorry for the rambling on..., Mom to Nikki 9Chelsey 12.5 being testedPlease contact mito-owner with any problems or questions.

January 7, 1996

Michele,

Never feel that you are rambling. You are sharing. Sharing both your feelings and your anger, which is why we are all here.

I know that I would not have coped without the support and caring nature behind people in such support groups as this one so share your frustration's with us as much as you wish and as often as you wish.

Remember Michele 'Even this will have to pass'.

Hugs,

.

New to group-not to Mito

Hello everyone,My name is and I have a 9 year old daughter who was diagnosed with Mito/CVS/GERD. The CVS and GERD diagnosis' were just made yesterday, although it was talked about 3 years ago. Her Mito diagnosis came the week before Christmas. I had to let it go until after the holidays and now is time to move ahead. We, like so many others; have been through the gambet of testing and misdiagnoses. Everything from Munchhousen by Proxy to it's all in our heads. We are left with Mito, yet it's unclassified. Nikki's issues are with fatigue or illness-causing fasting-leading to vomiting and dehydration to hospitalization, 13 times so far. Now, on top of all the other meds she takes we now will be taking Elivil and Prevaced along with Carnitor,coQ10,Vit C & E, B1,B2. I cannot get the Carnitor covered by insurance and I'm paying close to $400.00 a month for everything. It just adds insult to injury...Sorry to sound so down, I just am today. We're tired. As a family- we're tired. I am so glad that someone on the FOD website suggested this group. I really need to listen to and learn from and share with someone else who understands. I feel so alone in all this. People look at you like you're making this up-Mito Disease? They've never heard of it so it must not be real... Sorry for the rambling on..., Mom to Nikki 9Chelsey 12.5 being testedPlease contact mito-owner with any problems or questions.

January 7, 1996

Michele,

Never feel that you are rambling. You are sharing. Sharing both your feelings and your anger, which is why we are all here.

I know that I would not have coped without the support and caring nature behind people in such support groups as this one so share your frustration's with us as much as you wish and as often as you wish.

Remember Michele 'Even this will have to pass'.

Hugs,

.

New to group-not to Mito

Hello everyone,My name is and I have a 9 year old daughter who was diagnosed with Mito/CVS/GERD. The CVS and GERD diagnosis' were just made yesterday, although it was talked about 3 years ago. Her Mito diagnosis came the week before Christmas. I had to let it go until after the holidays and now is time to move ahead. We, like so many others; have been through the gambet of testing and misdiagnoses. Everything from Munchhousen by Proxy to it's all in our heads. We are left with Mito, yet it's unclassified. Nikki's issues are with fatigue or illness-causing fasting-leading to vomiting and dehydration to hospitalization, 13 times so far. Now, on top of all the other meds she takes we now will be taking Elivil and Prevaced along with Carnitor,coQ10,Vit C & E, B1,B2. I cannot get the Carnitor covered by insurance and I'm paying close to $400.00 a month for everything. It just adds insult to injury...Sorry to sound so down, I just am today. We're tired. As a family- we're tired. I am so glad that someone on the FOD website suggested this group. I really need to listen to and learn from and share with someone else who understands. I feel so alone in all this. People look at you like you're making this up-Mito Disease? They've never heard of it so it must not be real... Sorry for the rambling on..., Mom to Nikki 9Chelsey 12.5 being testedPlease contact mito-owner with any problems or questions.

March 22, 2004

Hi and welcome to the group. I'm glad you finally received a diagnosis for Nicki and you can stop searching for an answer. As far as people not understanding, I often give people who have questions the UMDF website and tell them to check it out. www.umdf.org The website explains the disease a lot better than I ever could!

I am wondering why you can't get your insurance to pay for the Carnitor? It is available only by prescription. I guess I would fight to get that paid for.

I'm glad you have found this support group. I stumbled across this group about 6 months after receiving our diagnosis. The previous 6 months, I was in complete denial and a state of shock. I can honestly say this group has helped me come to terms with this disease and has helped me to enjoy the good moments and not dwell on the bad. I love my girls with every inch of who I am and I will do everything I can to give them the best possible life experience they can have.

I pray for peace for you and your family in coming to terms with this diagnosis. Please know that you are not alone. We are all here to listen, share our experiences and give you any support we can.

Kim - Mom to and Lindsey (2) Partial Complex I (seizures, myoclonus, hypotonia, photosensitivity, heat intolerance, and the best snugglers in the world), Mason (4) Healthy, Delaney (6) Healthy, and husband Matt.

New to group-not to Mito

Hello everyone,My name is and I have a 9 year old daughter who was diagnosed with Mito/CVS/GERD. The CVS and GERD diagnosis' were just made yesterday, although it was talked about 3 years ago. Her Mito diagnosis came the week before Christmas. I had to let it go until after the holidays and now is time to move ahead. We, like so many others; have been through the gambet of testing and misdiagnoses. Everything from Munchhousen by Proxy to it's all in our heads. We are left with Mito, yet it's unclassified. Nikki's issues are with fatigue or illness-causing fasting-leading to vomiting and dehydration to hospitalization, 13 times so far. Now, on top of all the other meds she takes we now will be taking Elivil and Prevaced along with Carnitor,coQ10,Vit C & E, B1,B2. I cannot get the Carnitor covered by insurance and I'm paying close to $400.00 a month for everything. It just adds insult to injury...Sorry to sound so down, I just am today. We're tired. As a family- we're tired. I am so glad that someone on the FOD website suggested this group. I really need to listen to and learn from and share with someone else who understands. I feel so alone in all this. People look at you like you're making this up-Mito Disease? They've never heard of it so it must not be real... Sorry for the rambling on..., Mom to Nikki 9Chelsey 12.5 being testedPlease contact mito-owner with any problems or questions.

March 22, 2004

Hi and welcome to the group. I'm glad you finally received a diagnosis for Nicki and you can stop searching for an answer. As far as people not understanding, I often give people who have questions the UMDF website and tell them to check it out. www.umdf.org The website explains the disease a lot better than I ever could!

I am wondering why you can't get your insurance to pay for the Carnitor? It is available only by prescription. I guess I would fight to get that paid for.

I'm glad you have found this support group. I stumbled across this group about 6 months after receiving our diagnosis. The previous 6 months, I was in complete denial and a state of shock. I can honestly say this group has helped me come to terms with this disease and has helped me to enjoy the good moments and not dwell on the bad. I love my girls with every inch of who I am and I will do everything I can to give them the best possible life experience they can have.

I pray for peace for you and your family in coming to terms with this diagnosis. Please know that you are not alone. We are all here to listen, share our experiences and give you any support we can.

Kim - Mom to and Lindsey (2) Partial Complex I (seizures, myoclonus, hypotonia, photosensitivity, heat intolerance, and the best snugglers in the world), Mason (4) Healthy, Delaney (6) Healthy, and husband Matt.

New to group-not to Mito

Hello everyone,My name is and I have a 9 year old daughter who was diagnosed with Mito/CVS/GERD. The CVS and GERD diagnosis' were just made yesterday, although it was talked about 3 years ago. Her Mito diagnosis came the week before Christmas. I had to let it go until after the holidays and now is time to move ahead. We, like so many others; have been through the gambet of testing and misdiagnoses. Everything from Munchhousen by Proxy to it's all in our heads. We are left with Mito, yet it's unclassified. Nikki's issues are with fatigue or illness-causing fasting-leading to vomiting and dehydration to hospitalization, 13 times so far. Now, on top of all the other meds she takes we now will be taking Elivil and Prevaced along with Carnitor,coQ10,Vit C & E, B1,B2. I cannot get the Carnitor covered by insurance and I'm paying close to $400.00 a month for everything. It just adds insult to injury...Sorry to sound so down, I just am today. We're tired. As a family- we're tired. I am so glad that someone on the FOD website suggested this group. I really need to listen to and learn from and share with someone else who understands. I feel so alone in all this. People look at you like you're making this up-Mito Disease? They've never heard of it so it must not be real... Sorry for the rambling on..., Mom to Nikki 9Chelsey 12.5 being testedPlease contact mito-owner with any problems or questions.

March 22, 2004

, I had the same problem with insurance not covering the Carnitor a couple years ago. I was told about the National Organisation for Rare Disorders, they can help with the cost. The website is: http://www.rarediseases.org/programs/medication

Sigma-tau Pharmaceuticals, Inc.

CARNITOR® Drug Assistance Program

(L-Carnitine or levo carnitine)

Conditions:

Primary systemic carnitine deficiency, dialysis, chronic fatigue syndrome (CFS), several rare metabolic disorders

Contact:

NORD at 1- e-mail bnavarette@...

I hope this can help!

Heidi Payton

March 22, 2004

I cannot get the Carnitor covered by insurance

, Medicaid would not cover Carnitore at first, as well. I had my daughter's neuro (who dx'd her) write a letter saying what she had, why the Carnitore would help, and why it had to be Carnitore and not generic OTC carnitine. The pharmicist was nice enough to fax it to the right people and it was approved. It may also help to track down info at umdf.org about why Carnitore is reccomended.

Welcome to the group! You will find a lot of support here, and never be afraid to vent! That's what we're here for=)

e, Chelsea's mom(non specific mito)

March 22, 2004

I cannot get the Carnitor covered by insurance

, Medicaid would not cover Carnitore at first, as well. I had my daughter's neuro (who dx'd her) write a letter saying what she had, why the Carnitore would help, and why it had to be Carnitore and not generic OTC carnitine. The pharmicist was nice enough to fax it to the right people and it was approved. It may also help to track down info at umdf.org about why Carnitore is reccomended.

Welcome to the group! You will find a lot of support here, and never be afraid to vent! That's what we're here for=)

e, Chelsea's mom(non specific mito)

March 22, 2004

I cannot get the Carnitor covered by insurance

, Medicaid would not cover Carnitore at first, as well. I had my daughter's neuro (who dx'd her) write a letter saying what she had, why the Carnitore would help, and why it had to be Carnitore and not generic OTC carnitine. The pharmicist was nice enough to fax it to the right people and it was approved. It may also help to track down info at umdf.org about why Carnitore is reccomended.

Welcome to the group! You will find a lot of support here, and never be afraid to vent! That's what we're here for=)

e, Chelsea's mom(non specific mito)

March 22, 2004

Dear ,

Welcome to the

group. I wish this was under different circumstances. Neverthless, I hope you

will find this group helpful and supportive. I have only been part of this

group for a little over a year now through the death of my 8 year old, Samya. I

have found so much love, support and understanding that reading the posts is a

daily part of my life now. You start to feel like you belong to a family that

understands you more than your “Real “ family by far. Never

apologize for venting. We have all felt like you do and probably do daily. We

know too well of the frustration, anger, hurt, disappointment that comes with a

long search for a diagnosis that only leads you to a nightmare answer. Before I

found out that my 2 girls have mito,

I thought nothing icould be worse than not knowing what they had. Now there are

times where I am not so sure of that when the answer is mito. I know what you meant by putting

off dealing with it until Christmas was over. When Samya died on December 10,

2002 I took Leanna to children’s hospital on December 26 at 8 a.m. for

the dreaded blood test which would confirm what I already knew in my heart.

That Christmas will be unforgettable if nothing else. I pray you will finr the

support you need to help you get through this. We are all in this together and

this group has amazing compassion for each other. Godd luck,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email: Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: Gianino

Sent: Friday, March 19, 2004 12:33

PM

To: Mito

Subject:

New to group-not to Mito

Hello everyone,

My name is and I have a 9 year old

daughter who was diagnosed

with Mito/CVS/GERD. The CVS and GERD

diagnosis' were just made

yesterday, although it was talked about 3 years

ago. Her Mito

diagnosis

came the week before Christmas. I had to let

it go until after the

holidays and now is time to move ahead. We, like

so many others; have

been through the gambet of testing and

misdiagnoses. Everything from

Munchhousen by Proxy to it's all in our heads. We

are left with Mito,

yet it's unclassified. Nikki's issues are

with fatigue or

illness-causing fasting-leading to vomiting and

dehydration to

hospitalization, 13 times so

far. Now, on top of all the other meds

she takes we now will be taking Elivil and

Prevaced along with

Carnitor,coQ10,Vit C & E, B1,B2. I cannot

get the Carnitor covered by

insurance and I'm paying close to $400.00 a month

for everything. It

just adds insult to injury...Sorry to sound so

down, I just am today.

We're tired. As a family- we're tired.

I am so glad that someone on

the FOD website suggested this group. I

really need to listen to and

learn from and share with someone else who

understands. I feel so alone

in all this. People look at you like you're

making this up-Mito

Disease? They've never heard of it so it

must not be real... Sorry for

the rambling on...

, Mom to Nikki 9

Chelsey 12.5 being tested

Please

contact mito-owner with any problems or questions.

March 22, 2004