ATHENA - Mito Blood Test?

[Guest guest]

Hi - I haven't posted for a long time but hope I can get some help.

My husband has suspected Mitochondrial Myopathy. Like most of you,

his story is long and complicated. In a nutshell he was24 years old,

active duty military (not Gulf War) and in excellent physical

condition. He went into muscle failure after a routine excercise

session and was discovered to have a CPK of 51,000. He is 28 years

old and uses a wheelchair to go out, he's semi moblie but nowhere

near what he used to be. He has also developed a cardio myopathy

and some neuropathy.

We've been to every expert in the book, and no one was ever able to

help. He had a muscle biopsy done but it wasn't fresh and didn't

tell us anything.

A few weeks ago a friend told me she works for a great neurologist,

and the more we talked, the more it sounded like this doctor was the

sort we were looking for. He really likes tough cases that nobody

else has been able to solve. We went to see him today, armed with

all of our UMDF info. He's very receptive and said he had a few

mito patients with different syndromes. He told us there is a blood

test for Mitochondrial Myopathy from Athena Labs. He said it's new -

just within the last year or two. I've been out of the loop for

about that long and have heard nothing about Athena labs or a Mito

blood test. What information can you give me on this test? Is it

any good? Is it accurate? I looked at the Athena web site and it

tells the types of Mito they can test for, but I have no idea if it

is a comprehensive list.

This doctor maintains that mitochondrial diseases are passed from

the mother, and since my husband's mother has no disease of this

type, he thinks that is reason enough to look elsewhere. I remember

some genetics doctors speculating that this could be a " new case "

mutation, but I don't know what the chances of that are. However,

rare seems to run in our family. lol.

The doctor seems good and is doing a lot of other bloodwork in

addition to the mito blood panel, but I'm concerned about the

accuracy of this test and if it comes back negative what that will

mean. My husband doesn't necessarily want to have Mito, but we

looked for an answer for so long, and this is the only thing that

really makes sense and explains his problems. It just seems strange

for someone to question it. However, we did go to him looking for

answers.

If anyone has any information or experience on Athena Labs, I would

love to know more.

Thanks!

Amy ('s wife)