Re: New here - Long post - possible complex 1

January 4, 2001

Dear Nikki:

Welcome to the group. You will find a lot of good answers here. My daughter is

2 1/2 with some sort of

mito. May be Complex 1. We see a metabolic specialist and a neurologist. Leah

is on Carnitor and her

type of mito cocktail is as follows:

twice a day she gets 1/2 tablet of B1, 1 capsule of B50, 1/2 capsule of Biotin,

2 1/2 cc's of Carnitor, 1

capsule of 200 vitamin E and 1 capsule of 30 mg of CoQ10. You will find this

cocktail from other mito

parents. It happens to any one. This board is a wide age span. You get good

information to ask your

doctor. There are different brands of CoQ10 and some work better than others.

Just ask the questions and

we will be here to help you. Are you getting any therapy such as OT and PT?

Are you on your own or

living at home? Good luck and please keep checking the mito groups. They are a

neat group of people.

Nerenhausen mom to Leah 2 1/2

nikkinet@... wrote:

> Hello, This is my first post here. I am a 20 year old Female with a

> mitochondria disease that was just diagnosed. The doctors believe I

> have had it since birth, but it took them a long time to catch it.

> They are still working on which one it is, but think it might be

> Complex 1 or carnintine-something-carnitine. I cant remember the

> whole name. I will find out next month when I see my neuro muscular

> doctor which one it is. I also have Central Sleep Apnea, Seizures

> and a myopathy/myalgia that they think is from the Mitochondria

> problem. I use a wheelchair to get around, and my situation is

> progressive. Each year I have less and less energy and each year my

> muscles seem to get weaker. I use a Bi-Pap ST at night to help me

> breathe because of the Apnea, I use a SMART monitor to monitor the

> apnea, I use a pulse ox, and an o2 concentrator as needed, and an

> oxygen oxylite system during the day for fatigue and lack of o2. The

> docs are working on getting me a capnotmeter, a machine that measures

> how much co2 I am blowing off. The weakness in muscles is everywhere,

> but the doctors are really worried about my lung muscles and my

> heart muscles. I have a lot of lactic acid buildup that causes pain.

>

> I have several questions and hope maybe someone here can help. Is

> this condition common in children and adults or one specific group? I

> keep reading that there is no treatment and no cure, is that true? Do

> any home remedies or diets or anything help? Is there anything I can

> do to get more energy? The doctors have me on 6 grams of Creatine to

> help with energy, but they told me that is not a long term treatment

> and could hurt my kidneys, they arent sure. It doesnt give me very

> much anyway, but significantly MORE than what I had.

>

> I am really grateful for this board and everyone here. Any help you

> could give me would be greatly appreciated. Thank you so much!

>

> Nikki

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

January 4, 2001

Hi Nikki.

Welcome to the list. I don't know that I can help you with all of your

questions, but I can tell you that

there is no one group of people that mito affects.

Some kids are affected from birth, while other people don't show signs until

adulthood. Some people are

very severely affected, while others are so mildly affected that it's difficult

to make the diagnosis. And

of course, everywhere in between. Even within one family, there can be that

difference in presentation.

And no two people with the same diagnosis will experience the exact same

symptoms and severity of

symptoms, if that makes any sense.

Along with that, it makes it impossible for anyone to tell you what will

definitely work for you. It's a

trial and error situation, because the vitamins and supplements that help

someone else might not

necessarily work for you. There is no cure for mito at this time. There are

supplements known within the

mito community that have helped some people. Some one else is gonna have to jump

in here, though, because

I never had any good results for with the supplements. As for diet, that

is something that is very

specific to each person, and something that you will need to discuss with your

doctor. For example, we

knew that fructose made my son's lactic acid levels skyrocket, so he was put on

a fructose-free diet, but

that is not appropriate for everyone. Some people seem to have trouble with

carbohydrates, while others

are okay with carbs, but don't do well with proteins or fats.

Sorry I couldn't be more help, but I'm sure that someone more knowledgeable than

I can step in and help

some, too.

, momma to

^^ 12/23/98-6/9/00

Pearson's syndrome and Kearns-Sayre syndrome

(And Gracie and Adri too!)