Re: muscle biopsy results!

[Guest guest]

It is interesting to hear information regarding muscle biopsies. I

am definitely begining to believe mine was botched. THey did not

rush my biopsy off after it was doen. The nurse took her time. I

also know that it sat in the refridgerator over the weekend before

anything was done to it. It was then flash frozen to be sent out. I

was wondering if this could make a difference. My biopsy showed mild

abnormalities with some accumulation of mitochondria and lipids. The

electron transport chain was normal and I was told I do not have

mito. I believe this is incorrect due to family members symptoms and

medical status. I am convinced that this has to be mito. The next

biopsy I have will be fresh.

Bob good luck, I hope you find answers soon!

Dawn A

[Guest guest]

It is interesting to hear information regarding muscle biopsies. I

am definitely begining to believe mine was botched. THey did not

rush my biopsy off after it was doen. The nurse took her time. I

also know that it sat in the refridgerator over the weekend before

anything was done to it. It was then flash frozen to be sent out. I

was wondering if this could make a difference. My biopsy showed mild

abnormalities with some accumulation of mitochondria and lipids. The

electron transport chain was normal and I was told I do not have

mito. I believe this is incorrect due to family members symptoms and

medical status. I am convinced that this has to be mito. The next

biopsy I have will be fresh.

Bob good luck, I hope you find answers soon!

Dawn A

[Guest guest]

Dawn

Some information is gathered by using the electron microscope on a frozen

section of tissue. This would be things like looking for ragged red fibers

(seen after the tissue that has been stained), numbers of mitochondria,

organization of muscle tissue, etc.

I didn't have a positive muscle biopsy until it was done on a very fresh

sample of muscle - runner in the OR to rush tissue to lab. This is one

reason that it takes so long to schedule a fresh biopsy. It means the

co-ordination of more than one department in the hospital.

I was told that 1/3 of my muscle would be used immediately for testing of

the respirtory chain, 1/3 would be frozen for microscopic testing and 1/3

would be frozen for any future testing that might be done as a result of new

technology.

I'm glad you are going to go for a fresh muscle biopsy next time.

laurie

>

> Reply-To:

> Date: Wed, 29 Dec 2004 14:49:30 -0000

> To:

> Subject: Re: muscle biopsy results!

>

>

> It is interesting to hear information regarding muscle biopsies. I

> am definitely begining to believe mine was botched. THey did not

> rush my biopsy off after it was doen. The nurse took her time. I

> also know that it sat in the refridgerator over the weekend before

> anything was done to it. It was then flash frozen to be sent out. I

> was wondering if this could make a difference. My biopsy showed mild

> abnormalities with some accumulation of mitochondria and lipids. The

> electron transport chain was normal and I was told I do not have

> mito. I believe this is incorrect due to family members symptoms and

> medical status. I am convinced that this has to be mito. The next

> biopsy I have will be fresh.

>

> Bob good luck, I hope you find answers soon!

>

> Dawn A

>

>

>

>

>

> 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 would have to say Laurie's and others recounting of their

experiences with muscle biopsies are what drove me to make sure my

first muscle biopsy was fresh, even though it was a huge annoyance on

our part to go almost 1,000 miles to Georgia to get it done (with my

husband, two little kids, and pregnant at the time).

THANKS LAURIE and all of you who shared your experiences with us. I'm

sorry that some of us have to be " pathfinders " , but me and my family

thanks you guys that you perservered and are able to help

us " newbies " out.

Take care,

RH

> Dawn

>

> Some information is gathered by using the electron microscope on a

frozen

> section of tissue. This would be things like looking for ragged red

fibers

> (seen after the tissue that has been stained), numbers of

mitochondria,

> organization of muscle tissue, etc.

>

> I didn't have a positive muscle biopsy until it was done on a very

fresh

> sample of muscle - runner in the OR to rush tissue to lab. This is

one

> reason that it takes so long to schedule a fresh biopsy. It means

the

> co-ordination of more than one department in the hospital.

>

> I was told that 1/3 of my muscle would be used immediately for

testing of

> the respirtory chain, 1/3 would be frozen for microscopic testing

and 1/3

> would be frozen for any future testing that might be done as a

result of new

> technology.

>

> I'm glad you are going to go for a fresh muscle biopsy next time.

>

> laurie

>

> > From: " dawnanich "

> > Reply-To:

> > Date: Wed, 29 Dec 2004 14:49:30 -0000

> > To:

> > Subject: Re: muscle biopsy results!

> >

> >

> > It is interesting to hear information regarding muscle biopsies. I

> > am definitely begining to believe mine was botched. THey did not

> > rush my biopsy off after it was doen. The nurse took her time. I

> > also know that it sat in the refridgerator over the weekend before

> > anything was done to it. It was then flash frozen to be sent out.

I

> > was wondering if this could make a difference. My biopsy showed

mild

> > abnormalities with some accumulation of mitochondria and lipids.

The

> > electron transport chain was normal and I was told I do not have

> > mito. I believe this is incorrect due to family members symptoms

and

> > medical status. I am convinced that this has to be mito. The next

> > biopsy I have will be fresh.

> >

> > Bob good luck, I hope you find answers soon!

> >

> > Dawn A

> >

> >

> >

> >

> >

> > 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

Posting my experiences gives me a purpose in life. It is something I have to

give to others. You, in turn, will give your experiences to help others. The

path of sharing, learning, and accepting is one we all travel at what ever

speed we can manage. We all have our strengths and I have found on this list

a great willingness to share those strengths with each other. I am also

thankful for you and the others on this list.

laurie

>

> Reply-To:

> Date: Thu, 30 Dec 2004 01:40:47 -0000

> To:

> Subject: Re: muscle biopsy results!

>

>

> I would have to say Laurie's and others recounting of their

> experiences with muscle biopsies are what drove me to make sure my

> first muscle biopsy was fresh, even though it was a huge annoyance on

> our part to go almost 1,000 miles to Georgia to get it done (with my

> husband, two little kids, and pregnant at the time).

>

> THANKS LAURIE and all of you who shared your experiences with us. I'm

> sorry that some of us have to be " pathfinders " , but me and my family

> thanks you guys that you perservered and are able to help

> us " newbies " out.

>

> Take care,

> RH

>

>

>

>> Dawn

>>

>> Some information is gathered by using the electron microscope on a

> frozen

>> section of tissue. This would be things like looking for ragged red

> fibers

>> (seen after the tissue that has been stained), numbers of

> mitochondria,

>> organization of muscle tissue, etc.

>>

>> I didn't have a positive muscle biopsy until it was done on a very

> fresh

>> sample of muscle - runner in the OR to rush tissue to lab. This is

> one

>> reason that it takes so long to schedule a fresh biopsy. It means

> the

>> co-ordination of more than one department in the hospital.

>>

>> I was told that 1/3 of my muscle would be used immediately for

> testing of

>> the respirtory chain, 1/3 would be frozen for microscopic testing

> and 1/3

>> would be frozen for any future testing that might be done as a

> result of new

>> technology.

>>

>> I'm glad you are going to go for a fresh muscle biopsy next time.

>>

>> laurie

>>

>>> From: " dawnanich "

>>> Reply-To:

>>> Date: Wed, 29 Dec 2004 14:49:30 -0000

>>> To:

>>> Subject: Re: muscle biopsy results!

>>>

>>>

>>> It is interesting to hear information regarding muscle biopsies. I

>>> am definitely begining to believe mine was botched. THey did not

>>> rush my biopsy off after it was doen. The nurse took her time. I

>>> also know that it sat in the refridgerator over the weekend before

>>> anything was done to it. It was then flash frozen to be sent out.

> I

>>> was wondering if this could make a difference. My biopsy showed

> mild

>>> abnormalities with some accumulation of mitochondria and lipids.

> The

>>> electron transport chain was normal and I was told I do not have

>>> mito. I believe this is incorrect due to family members symptoms

> and

>>> medical status. I am convinced that this has to be mito. The next

>>> biopsy I have will be fresh.

>>>

>>> Bob good luck, I hope you find answers soon!

>>>

>>> Dawn A

>>>

>>>

>>>

>>>

>>>

>>> 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

Posting my experiences gives me a purpose in life. It is something I have to

give to others. You, in turn, will give your experiences to help others. The

path of sharing, learning, and accepting is one we all travel at what ever

speed we can manage. We all have our strengths and I have found on this list

a great willingness to share those strengths with each other. I am also

thankful for you and the others on this list.

laurie

>

> Reply-To:

> Date: Thu, 30 Dec 2004 01:40:47 -0000

> To:

> Subject: Re: muscle biopsy results!

>

>

> I would have to say Laurie's and others recounting of their

> experiences with muscle biopsies are what drove me to make sure my

> first muscle biopsy was fresh, even though it was a huge annoyance on

> our part to go almost 1,000 miles to Georgia to get it done (with my

> husband, two little kids, and pregnant at the time).

>

> THANKS LAURIE and all of you who shared your experiences with us. I'm

> sorry that some of us have to be " pathfinders " , but me and my family

> thanks you guys that you perservered and are able to help

> us " newbies " out.

>

> Take care,

> RH

>

>

>

>> Dawn

>>

>> Some information is gathered by using the electron microscope on a

> frozen

>> section of tissue. This would be things like looking for ragged red

> fibers

>> (seen after the tissue that has been stained), numbers of

> mitochondria,

>> organization of muscle tissue, etc.

>>

>> I didn't have a positive muscle biopsy until it was done on a very

> fresh

>> sample of muscle - runner in the OR to rush tissue to lab. This is

> one

>> reason that it takes so long to schedule a fresh biopsy. It means

> the

>> co-ordination of more than one department in the hospital.

>>

>> I was told that 1/3 of my muscle would be used immediately for

> testing of

>> the respirtory chain, 1/3 would be frozen for microscopic testing

> and 1/3

>> would be frozen for any future testing that might be done as a

> result of new

>> technology.

>>

>> I'm glad you are going to go for a fresh muscle biopsy next time.

>>

>> laurie

>>

>>> From: " dawnanich "

>>> Reply-To:

>>> Date: Wed, 29 Dec 2004 14:49:30 -0000

>>> To:

>>> Subject: Re: muscle biopsy results!

>>>

>>>

>>> It is interesting to hear information regarding muscle biopsies. I

>>> am definitely begining to believe mine was botched. THey did not

>>> rush my biopsy off after it was doen. The nurse took her time. I

>>> also know that it sat in the refridgerator over the weekend before

>>> anything was done to it. It was then flash frozen to be sent out.

> I

>>> was wondering if this could make a difference. My biopsy showed

> mild

>>> abnormalities with some accumulation of mitochondria and lipids.

> The

>>> electron transport chain was normal and I was told I do not have

>>> mito. I believe this is incorrect due to family members symptoms

> and

>>> medical status. I am convinced that this has to be mito. The next

>>> biopsy I have will be fresh.

>>>

>>> Bob good luck, I hope you find answers soon!

>>>

>>> Dawn A

>>>

>>>

>>>

>>>

>>>

>>> 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.

>>>

>>>

>>>

>>>