Preliminary Muscle Biopsy Results

[Guest guest]

Hello Everyone,

I recently received my muscle biopsy results. The surgeon said that

some of the Type II fibers are atrophic and the preliminary

diagnosis would be Type II muscle atrophy. He said this is usually

caused by steroid use but I've never used steroids. He said to

follow-up with my Neurologist to see if he wants to do any further

test but I have been unsuccessful in trying to reach him. I've left

eight messages for him over the past two weeks and he has yet to

call me back. I even sent him an e-mail to which he has not

responded. Needless to say, I'm very anxious to learn what Type II

muscle atrophy is and if there is a treatment. i'm also very

frustrated with his lack of responsiveness. My follow-up appointment

was scheduled for this Friday, but his office called last week to re-

schedule. The next available appointment is June 12! Any information

or advise would be greatly appreciated.

Thanks,

Lynn

[Guest guest]

Lynn

That was the primary finding on 4 muscle biopsies I had. It wasn't until I

had a fresh biopsy and the respiratory chain was checked that I got a mito

diagnosis. It sounds like you may have had electron microscopy done on your

muscle to show the type 2 atrophy.

Have you been seen by an MDA neurologist?

laurie

>

> Reply-To:

> Date: Wed, 05 May 2004 22:00:32 -0000

> To:

> Subject: Preliminary Muscle Biopsy Results

>

> Hello Everyone,

>

> I recently received my muscle biopsy results. The surgeon said that

> some of the Type II fibers are atrophic and the preliminary

> diagnosis would be Type II muscle atrophy. He said this is usually

> caused by steroid use but I've never used steroids. He said to

> follow-up with my Neurologist to see if he wants to do any further

> test but I have been unsuccessful in trying to reach him. I've left

> eight messages for him over the past two weeks and he has yet to

> call me back. I even sent him an e-mail to which he has not

> responded. Needless to say, I'm very anxious to learn what Type II

> muscle atrophy is and if there is a treatment. i'm also very

> frustrated with his lack of responsiveness. My follow-up appointment

> was scheduled for this Friday, but his office called last week to re-

> schedule. The next available appointment is June 12! Any information

> or advise would be greatly appreciated.

>

> Thanks,

>

> Lynn

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Isn't that common in Fibromyalgia too ? I can't remember for sure.

bug

[Guest guest]

Hi Laureta,

Thanks for the feedback. Yes. I was seen by Dr. Hirano at the MDA Clinic at

Columbia in N.Y. They took several specimens any tested some fresh and frozen. I

have a copy of the report. It states there are no ragged red fibers or other

signs of mito disorder. How can I tell if they checked the respiratory chain?

Is type II atrophy associated with a particular disorder. The surgeon said my

neuro might want to order additional bloodwork. Do you know what they might be

looking for? I've had lots of blood work done already. Thanks for your help.

Lynn

Preliminary Muscle Biopsy Results

>

> Hello Everyone,

>

> I recently received my muscle biopsy results. The surgeon said that

> some of the Type II fibers are atrophic and the preliminary

> diagnosis would be Type II muscle atrophy. He said this is usually

> caused by steroid use but I've never used steroids. He said to

> follow-up with my Neurologist to see if he wants to do any further

> test but I have been unsuccessful in trying to reach him. I've left

> eight messages for him over the past two weeks and he has yet to

> call me back. I even sent him an e-mail to which he has not

> responded. Needless to say, I'm very anxious to learn what Type II

> muscle atrophy is and if there is a treatment. i'm also very

> frustrated with his lack of responsiveness. My follow-up appointment

> was scheduled for this Friday, but his office called last week to re-

> schedule. The next available appointment is June 12! Any information

> or advise would be greatly appreciated.

>

> Thanks,

>

> Lynn

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Lynn

The type II atrophy is non-specific. I don't have ragged red fibers as is

the case for most with mito. If you have copies of the biopsy results, there

should be someplace that lists complexes I - V and the results.

The other labs might be an organic acid screen (urine) and amino acid screen

(blood). I might have the two mixed up.

If Dr. Hirano ordered the biopsy, I would think he would be able to explain

what tests he ordered on the biopsy tissue.

I know it is frustrating to wait and wait and then when the reports come in,

it only means more waiting. Hang in there.

laurie

>

> Reply-To:

> Date: Wed, 5 May 2004 22:43:55 -0400

> To: >

> Subject: Re: Preliminary Muscle Biopsy Results

>

> Hi Laureta,

>

> Thanks for the feedback. Yes. I was seen by Dr. Hirano at the MDA Clinic at

> Columbia in N.Y. They took several specimens any tested some fresh and frozen.

> I have a copy of the report. It states there are no ragged red fibers or other

> signs of mito disorder. How can I tell if they checked the respiratory chain?

>

> Is type II atrophy associated with a particular disorder. The surgeon said my

> neuro might want to order additional bloodwork. Do you know what they might be

> looking for? I've had lots of blood work done already. Thanks for your help.

>

> Lynn

> Preliminary Muscle Biopsy Results

>>

>> Hello Everyone,

>>

>> I recently received my muscle biopsy results. The surgeon said that

>> some of the Type II fibers are atrophic and the preliminary

>> diagnosis would be Type II muscle atrophy. He said this is usually

>> caused by steroid use but I've never used steroids. He said to

>> follow-up with my Neurologist to see if he wants to do any further

>> test but I have been unsuccessful in trying to reach him. I've left

>> eight messages for him over the past two weeks and he has yet to

>> call me back. I even sent him an e-mail to which he has not

>> responded. Needless to say, I'm very anxious to learn what Type II

>> muscle atrophy is and if there is a treatment. i'm also very

>> frustrated with his lack of responsiveness. My follow-up appointment

>> was scheduled for this Friday, but his office called last week to re-

>> schedule. The next available appointment is June 12! Any information

>> or advise would be greatly appreciated.

>>

>> Thanks,

>>

>> Lynn

>>

>>

>>

>> Medical advice, information, opinions, data and statements contained herein

>> are not necessarily those of the list moderators. The author of this e mail

>> is

>> entirely responsible for its content. List members are reminded of their

>> responsibility to evaluate the content of the postings and consult with their

>> physicians regarding changes in their own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends one is

>> automatically moderated or removed depending on the severity of the attack.

>>

>>

>>

>>

[Guest guest]

I have the ragged red fibers. Shoffner did my biopsy. Vivian

[Guest guest]

I don't have ragged red fibers either, but have no activity in

Complex I and reduced in other complexes. Still waiting for genetic

tests.

I wonder how many of us have RRF - it sounds like there are more than

a few who do not.

Take care,

RH

> Lynn

>

> The type II atrophy is non-specific. I don't have ragged red fibers

as is

> the case for most with mito. If you have copies of the biopsy

results, there

> should be someplace that lists complexes I - V and the results.

>

> The other labs might be an organic acid screen (urine) and amino

acid screen

> (blood). I might have the two mixed up.

>

> If Dr. Hirano ordered the biopsy, I would think he would be able to

explain

> what tests he ordered on the biopsy tissue.

>

> I know it is frustrating to wait and wait and then when the reports

come in,

> it only means more waiting. Hang in there.

>

> laurie

>

> > From: " Lynn Zona "

> > Reply-To:

> > Date: Wed, 5 May 2004 22:43:55 -0400

> > To: >

> > Subject: Re: Preliminary Muscle Biopsy Results

> >

> > Hi Laureta,

> >

> > Thanks for the feedback. Yes. I was seen by Dr. Hirano at the MDA

Clinic at

> > Columbia in N.Y. They took several specimens any tested some

fresh and frozen.

> > I have a copy of the report. It states there are no ragged red

fibers or other

> > signs of mito disorder. How can I tell if they checked the

respiratory chain?

> >

> > Is type II atrophy associated with a particular disorder. The

surgeon said my

> > neuro might want to order additional bloodwork. Do you know what

they might be

> > looking for? I've had lots of blood work done already. Thanks for

your help.

> >

> > Lynn

> > Preliminary Muscle Biopsy Results

> >>

> >> Hello Everyone,

> >>

> >> I recently received my muscle biopsy results. The surgeon said

that

> >> some of the Type II fibers are atrophic and the preliminary

> >> diagnosis would be Type II muscle atrophy. He said this is

usually

> >> caused by steroid use but I've never used steroids. He said to

> >> follow-up with my Neurologist to see if he wants to do any

further

> >> test but I have been unsuccessful in trying to reach him. I've

left

> >> eight messages for him over the past two weeks and he has yet to

> >> call me back. I even sent him an e-mail to which he has not

> >> responded. Needless to say, I'm very anxious to learn what Type

II

> >> muscle atrophy is and if there is a treatment. i'm also very

> >> frustrated with his lack of responsiveness. My follow-up

appointment

> >> was scheduled for this Friday, but his office called last week

to re-

> >> schedule. The next available appointment is June 12! Any

information

> >> or advise would be greatly appreciated.

> >>

> >> Thanks,

> >>

> >> Lynn

> >>

> >>

> >>

> >> Medical advice, information, opinions, data and statements

contained herein

> >> are not necessarily those of the list moderators. The author of

this e mail

> >> is

> >> entirely responsible for its content. List members are reminded

of their

> >> responsibility to evaluate the content of the postings and

consult with their

> >> physicians regarding changes in their own treatment.

> >>

> >> Personal attacks are not permitted on the list and anyone who

sends one is

> >> automatically moderated or removed depending on the severity of

the attack.

> >>

> >>

> >>

> >>

[Guest guest]

RH

I have read that only about 5% of people diagnosed with mito have ragged red

fibers. Not sure if this applies to both adults and children.

laurie

>

> Reply-To:

> Date: Thu, 06 May 2004 14:40:17 -0000

> To:

> Subject: Re: Preliminary Muscle Biopsy Results

>

> I don't have ragged red fibers either, but have no activity in

> Complex I and reduced in other complexes. Still waiting for genetic

> tests.

> I wonder how many of us have RRF - it sounds like there are more than

> a few who do not.

>

> Take care,

> RH

>

>

>

>> Lynn

>>

>> The type II atrophy is non-specific. I don't have ragged red fibers

> as is

>> the case for most with mito. If you have copies of the biopsy

> results, there

>> should be someplace that lists complexes I - V and the results.

>>

>> The other labs might be an organic acid screen (urine) and amino

> acid screen

>> (blood). I might have the two mixed up.

>>

>> If Dr. Hirano ordered the biopsy, I would think he would be able to

> explain

>> what tests he ordered on the biopsy tissue.

>>

>> I know it is frustrating to wait and wait and then when the reports

> come in,

>> it only means more waiting. Hang in there.

>>

>> laurie

>>

>>> From: " Lynn Zona "

>>> Reply-To:

>>> Date: Wed, 5 May 2004 22:43:55 -0400

>>> To: >

>>> Subject: Re: Preliminary Muscle Biopsy Results

>>>

>>> Hi Laureta,

>>>

>>> Thanks for the feedback. Yes. I was seen by Dr. Hirano at the MDA

> Clinic at

>>> Columbia in N.Y. They took several specimens any tested some

> fresh and frozen.

>>> I have a copy of the report. It states there are no ragged red

> fibers or other

>>> signs of mito disorder. How can I tell if they checked the

> respiratory chain?

>>>

>>> Is type II atrophy associated with a particular disorder. The

> surgeon said my

>>> neuro might want to order additional bloodwork. Do you know what

> they might be

>>> looking for? I've had lots of blood work done already. Thanks for

> your help.

>>>

>>> Lynn

>>> Preliminary Muscle Biopsy Results

>>>>

>>>> Hello Everyone,

>>>>

>>>> I recently received my muscle biopsy results. The surgeon said

> that

>>>> some of the Type II fibers are atrophic and the preliminary

>>>> diagnosis would be Type II muscle atrophy. He said this is

> usually

>>>> caused by steroid use but I've never used steroids. He said to

>>>> follow-up with my Neurologist to see if he wants to do any

> further

>>>> test but I have been unsuccessful in trying to reach him. I've

> left

>>>> eight messages for him over the past two weeks and he has yet to

>>>> call me back. I even sent him an e-mail to which he has not

>>>> responded. Needless to say, I'm very anxious to learn what Type

> II

>>>> muscle atrophy is and if there is a treatment. i'm also very

>>>> frustrated with his lack of responsiveness. My follow-up

> appointment

>>>> was scheduled for this Friday, but his office called last week

> to re-

>>>> schedule. The next available appointment is June 12! Any

> information

>>>> or advise would be greatly appreciated.

>>>>

>>>> Thanks,

>>>>

>>>> Lynn

>>>>

>>>>

>>>>

>>>> Medical advice, information, opinions, data and statements

> contained herein

>>>> are not necessarily those of the list moderators. The author of

> this e mail

>>>> is

>>>> entirely responsible for its content. List members are reminded

> of their

>>>> responsibility to evaluate the content of the postings and

> consult with their

>>>> physicians regarding changes in their own treatment.

>>>>

>>>> Personal attacks are not permitted on the list and anyone who

> sends one is

>>>> automatically moderated or removed depending on the severity of

> the attack.

>>>>

>>>>

>>>>

>>>>

[Guest guest]

,

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Go to

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Alice

My Dx is mitochondrial myopathy based on the mucle biopsy, ischemic ex test

and symptoms, fatigue episodes, diffuculty swallowing, blurred vision attacks,

degerating retinas, deaf in one ear etc. susan