Re: Jack Black Sister Question Answered

[Guest guest]

Thanks Alice! It is nice to know that she doesn't have Mito anymore. I wish I

knew how they diagnosed her the first time and what tests that Dr. Haas did this

time to rule it out.

Kind of makes you wonder if all the testing that we are going through is as

accurate as we take it to be, and that would be for both Positive and Negative

results.

I wonder how many have been diagnosed with Mito but really don't have it. Sure

wish we knew more.

Ann-Marie

Jack Black Sister Question Answered

Hi Alice

Jack's sister was diagnosed with Mito and had worn this diagnosis for a few

years. The family sought out a " second opinion " and further testing and wound up

at UCSD in the hands of Dr Haas. After extensive testing and a muscle biopsy the

conclusion was that it WAS NOT MITO - Her symptoms had been getting better and

to get the news that she was officially " un-diagnosed " from Mito I'm sure also

helped her mentally.

Sharon

[Guest guest]

Hi, Just wanted to share our experience with this. (Our oldest son, Seth,

was diagnosed by muscle biopsy in 1997 by Dr. DiMauro. This testing showed

a deficiency in Complex III and he was diagnosed with mito. We then took

Seth to see Dr. Haas in 1999. He did another muscle biopsy which he said

proved Seth didn’t have mito since there was no deficiency in Complex III.

We were very confused. Our neuro wrote both docs asking that they address

the differences and try to explain them. After two requests and a year

later, Dr. DiMauro requested some of Seth’s remaining muscle tissue from San

Diego. Dr. DiMauro retested some of the original muscle and also found a

CoEnzyme 10 deficiency in the muscle. He then ran the same tests on the

second biopsied muscle. It showed no deficiency in CoQ10. They discussed

it and decided that the difference was due to the fact that after the

original muscle biopsy, we had begun supplementation with COQ10. Once the

muscle levels of COQ10 were normalized, their theory is that the Complex III

(which they decided was secondary) also normalized. If we hadn’t pressed

the issue, we would think Seth didn’t have mito and would still be without a

diagnosis for his brother who presented also. They just don’t know enough

about the diagnosis yet. Now they’re starting to require that people be off

of supplementation during muscle biopsies, I guess to prevent these kinds of

false negatives. Unfortunately, normalizing the muscle COQ10 hasn’t fixed

Seth’s brain or really fixed his use of his muscles either. Just wanted to

share.

Cindy Cruz (mom to Seth and Ben, both mito)

Re: Jack Black Sister Question Answered

Thanks Alice! It is nice to know that she doesn't have Mito anymore. I wish

I knew how they diagnosed her the first time and what tests that Dr. Haas

did this time to rule it out.

Kind of makes you wonder if all the testing that we are going through is as

accurate as we take it to be, and that would be for both Positive and

Negative results.

I wonder how many have been diagnosed with Mito but really don't have it.

Sure wish we knew more.

Ann-Marie

[Guest guest]

Hi, Just wanted to share our experience with this. (Our oldest son, Seth,

was diagnosed by muscle biopsy in 1997 by Dr. DiMauro. This testing showed

a deficiency in Complex III and he was diagnosed with mito. We then took

Seth to see Dr. Haas in 1999. He did another muscle biopsy which he said

proved Seth didn’t have mito since there was no deficiency in Complex III.

We were very confused. Our neuro wrote both docs asking that they address

the differences and try to explain them. After two requests and a year

later, Dr. DiMauro requested some of Seth’s remaining muscle tissue from San

Diego. Dr. DiMauro retested some of the original muscle and also found a

CoEnzyme 10 deficiency in the muscle. He then ran the same tests on the

second biopsied muscle. It showed no deficiency in CoQ10. They discussed

it and decided that the difference was due to the fact that after the

original muscle biopsy, we had begun supplementation with COQ10. Once the

muscle levels of COQ10 were normalized, their theory is that the Complex III

(which they decided was secondary) also normalized. If we hadn’t pressed

the issue, we would think Seth didn’t have mito and would still be without a

diagnosis for his brother who presented also. They just don’t know enough

about the diagnosis yet. Now they’re starting to require that people be off

of supplementation during muscle biopsies, I guess to prevent these kinds of

false negatives. Unfortunately, normalizing the muscle COQ10 hasn’t fixed

Seth’s brain or really fixed his use of his muscles either. Just wanted to

share.

Cindy Cruz (mom to Seth and Ben, both mito)

Re: Jack Black Sister Question Answered

Thanks Alice! It is nice to know that she doesn't have Mito anymore. I wish

I knew how they diagnosed her the first time and what tests that Dr. Haas

did this time to rule it out.

Kind of makes you wonder if all the testing that we are going through is as

accurate as we take it to be, and that would be for both Positive and

Negative results.

I wonder how many have been diagnosed with Mito but really don't have it.

Sure wish we knew more.

Ann-Marie