New here - long post - possible complex 1

January 3, 2001

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

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