Re: awaiting diagnosis

[Guest guest]

Janet,

Hi! I am 28 and was diagnosed with mito at age 18. I was one of

the lucky ones and it only took 4 1/2 years of searching for a diagnosis.

I first started having symptoms that made my parents and I think

something was wrong when I was 13 or 14. I had a lot of muscle weakness

and pain, the main issue being with endurance. I was having issues with

fast heart rate, air hunger and severe migraines. Migraines did run in my

family though. Looking back I can see things from earlier years. I was

nodding my head and smiling when I read Laurie's post. I was just

talking to the gym teacher who is at the school I work at about climbing

ropes. We always did that during gymnastics unit and they are doing that

now, but no ropes. I could not get up the rope, really couldn't do much

except jump rope in gym. I always hated riding my bike when the

neighborhood kids wanted to ride theirs. I didn't understand that until

a couple years ago, that it was due to my endurance issues.

I did work as a full time sp. ed. teacher for 3 years, but had to

" retire " at age 25. My body couldn't put up with it anymore and I had my

first complex migraine, one with a stroke like episode or SLE. I use a

walker, cane or forearm crutches most of the time when I walk and can

sometimes go without, but only in my apartment. I use a wheelchair when

I am out and about or at work. I now work 15 hours a week as a reading

associate. Last year I had to get a power chair to use when I am at

work. I also have issues with the heart rate, autonomic dysfunction,

heat intolerance, which has been always, air hunger, I am diagnosed with

restricted lung disorder, but my pulmonologist says that it is due to the

muscle weakness. I also have the complex migraines, fatigue, and have

just gotten a G/J tube for help with fluid intake.

I do take most of the cocktail. I am one of few who can not take

CoQ10 or Carnitor. I get bad side effects from them and it can actually

do more damage. Like I said, I am one of few. I know there are one or

two others on this list who deal with that as well.

I am like Laurie and think of my symptoms as pretty mild. Once I

have a new symptom, I become accustomed to it and adapt my life for it.

Take care and feel free to ask any questions you need/want to.

Smiles,

a

[Guest guest]

> I do take most of the cocktail. I am one of few who can not take

> CoQ10 or Carnitor. I get bad side effects from them and it can

> actually do more damage. Like I said, I am one of few. I know

> there are one or two others on this list who deal with that as well.

I am another person who has trouble with CoQ10 and Carnitor. CoQ10

and NADH are two parts of the Complex I reactions in the

mitochondria. My understanding is that most people with mito disease

have low levels or problems using CoQ10; but people like me (and

a maybe) may have just fine CoQ10 in the body (a, have

you tested with a CoQ10 deficiency? I haven't.).

One thing I was just looking up at:

http://bio.winona.msus.edu/berg/241f99/Lec-note/Respira.htm

was that NADH is produced when pyruvate is oxidized (broken up), so

since I have low pyruvate levels, maybe the NADH pushes me towards

increasing the pyruvate levels.

For me, it seems my NADH is off, and I take NADH instead of CoQ10.

Currently, the only part of the mito cocktail I am on is NADH. I've

tried: CoQ10, Carnitor, Vitamin B complex, and niacin at various

times, most gave me problems within one or two doses. I, like a few

others, am on a low-carb (low glycemic index) diet, and that seems to

help my symptoms as well. But others need to take corn starch and

complex carbs to stay well, go figure.

As usual, I'm not a doctor, this is based on my own research.

Yes, this is a complex set of diseases!

Take care,

RH