Re: Cindy & Zander/Darla, a ? for you...

[Guest guest]

Darla, you mention in your reply that you were assumed to have had

MS for 13 yrs. Did you go through a muscle biopsy to rule mito in

for you? After talking with Jen Frost about our children, I had

told her I had MS, and she asked me if we knew for sure, or maybe it

was Mito. I did have two plaques on my MRI in 96, but on my repeat

head MRI, the plaques were GONE! My Neuro said sometimes they " burn

themselves out " the plaques, and I had another Dr congratulate me

and say the Avonex shots worked, which the interferon shots aren't

to make the plaques go away, it's to shorten exacerbations and keep

them farther apart. Any input you can give me on this I'd

appreciate. I'm not one to willingly go under the knife for a

muscle biopsy, a boob job, maybe eileen phelps

> ALL of the symptoms you mentioned my kids and I deal with!

Also, I was assumed to have MS for over 13 years before my daughter

was found to have Mito! Now they assume my condition is actually

Mito and my kids inherited it from me. Weak muscles, muscle

fatigue, exercise intolerance, popping joints, ptosis (My 4 year old

has this big time), and very common in Mito. Also a note to you to

remember is that Mito can show up in a person at ANY time during

their life. I began some symptoms as a teen and became much worse

after to much stress on my body at the age of 20. My daughter

Asenath showed symptoms when a toddler, by daughter Zipporrah

started showing Mito symptoms almost immediately after birth, my

oldest son began showing major signs two years ago and just this

past January had his FIRST stroke episode. I also have some kids

that are from 7-13 that show " soft signs " of Mito. Mito shows up at

different aged due to how bad their mitochondria is, what stresses

they have, etc. Feel free to ask further questions.

>

> Re: Digest Number 2672

>

> Hi again all, just wondering, I got some feedback from my sons

physio today.

> She said that she thinks that what she initially thought was

hypotonia and

> ataxia, probably isnt, which is good news for us. But she thinks

that he may

> have some type of muscle problem, where by his muscles have no

endurance,

> i.e. they wear out of energy very quickly, and possibly for some

reaon arent

> recharging correctly soon enough, sort of like what they think I

may have

> (myasthenia gravis) which is a neuromuscular transmition disorder,

it means

> that the little transmitters that tell my muslces that they have

more energy

> are faulty, so that when I use that energy up they arent gettign

the messge

> that theres more energy needed to be sent, I guess very similar in

a way to

> mito??? ANyway they are not sure if htats what I have anyway let

alone him

> having htat also, as he shouldnt as if it was congenital then I

would have

> had it all my life also, and he is too young for it to be like

mine (late

> onset), also they are still debating me also, as I am proving

negative for

> the tests so far, indicating that it may be something else!!!

(phew) also

> there some speculation that I may have MS instead or as well as.

>

> So to get to the quesitons!!!!

> do any of your children also have similar muscle problems, where

thier

> muscles run out of energy with repitition??? he also gets one

sided ptosis

> when tired and his joints " pop " when he is lifted up, his arms pop

and when

> chaning his nappy his hips pop also.

>

> Thanks

> Cindy

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