Re: Has anyone had this test done?

[Guest guest]

Hi Shayna,

I'm curious, where are you having these studies done???

My girls have anerobic metabolism studies done at least every six months but ALL

of the diagnostic studies associated with them are done noninvasively. The

blood testing is done using a peripheral vein and pulmonary function, cardiac

function, O2 and CO2 are measured noninvasively. And, they never stop any of

their supplements to have the studies completed. Placement of catheters also

carries risk, some minor and others major. I don't know why they can't obtain

valuable data using noninvasive monitoring. It also makes no sense to me why

they would have you off supplements unless they intend to repeat every study

after treatment to evaluate for changes.

To be honest, I've never heard of a study being done using the method you

describe for patients with mitochondrial disease. Is this being conducted under

the context of a formal research study or protocol? If so, I'd like to read the

Informed Consent document. With my girls the studies we do are used to help

monitor their metabolic fuction and I know similar testing is done on children

and adults with metabolic disease at that facility (sometimes as a part of the

diagnostic process and then to monitor after diagnosis). None that I know of

have an invasive component to their testing.

The only time my girls supplements have been stopped temporarily has been prior

to a fresh muscle biopsy.

shaynapearl happyclam8@...> wrote:

Now that I am more confident about the biopsy I'm having on Nov. 7,

I'm concerned about another test I'm getting on Nov. 3. I don't

know the name of the test. They will put a catheter through my neck

into an artery that goes down to my heart. There will be a smaller

line in my wrist. Then, with catheters in place, I will exercise on

a bike for 10 minutes. As I understand it, the purpose of the test

is to measure how much oxygen gets to my muscles. I was told that

it will not influence the treatments my mito doc prescribes for me,

but it will be a factor in the diagnosis.

Have any of you had this test done? If so, how did it go for you?

Apparently, it's a bit riskier than a biopsy. There's a small

chance that they could accidentally hit my lung which would make it

collapse and land me in the hospital for a day or two. But I think

the chance is really small. I'm nervous because it's so different

from any other procedure I've had.

My primary care doc (who is great) would prefer it if I took things

one step at a time—i.e. biopsy first, see what the results are, and

then, if it still seems useful, do the exercise test. However, he

said he would totally understand if I simply wanted to get the whole

thing over with and get as much information as soon as possible. He

says there's no right decision and it's up to me.

I would like to get it over with. But I'm nervous about it and I

wonder if I am letting impatience guide my choices—which isn't

necessarily such a good idea. I would feel better if I heard from

some of you that you had this test done, that it went OK, and that

you thought it was worth it. Alternatively, if you think this test

is overkill at this time, I would like to know that as well. In the

few short weeks that I've been in this group, I've come to have a

lot of respect for how you are all dealing with this disease and for

your knowledge.

If you don't mind my adding one other issue to an already-long note,

I've had to go off my carnitor in order to take these tests. If I

get them both done now, I can go back on the carnitor and stay on

it. If I decide to do the exercise test at a later date, I will

have to go off it for a month again because the carnitor can give

false results. Maybe going off for another month is not a big

deal. But I like the carnitor. It helps.

Thanks so much to anyone who has made it through this long note!

Best wishes to all,

Shayna

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 had a similar but different test done. An Ischemic exersice test. that places

a needle in your arm during that stays for thw whole test because as you

exercise, they draw blood periodicly to see if the o2 is going through the blood

to the muscle appropriatly. if show a metablic problem with pulling o2 from the

blood to the muscles with ex. I do believe being on carnitor could give a false

neg for this. susan BTY I had this done at university of Michigan

Joanne Kocourek servedogmom@...> wrote:Hi Shayna,

I'm curious, where are you having these studies done???

My girls have anerobic metabolism studies done at least every six months but ALL

of the diagnostic studies associated with them are done noninvasively. The

blood testing is done using a peripheral vein and pulmonary function, cardiac

function, O2 and CO2 are measured noninvasively. And, they never stop any of

their supplements to have the studies completed. Placement of catheters also

carries risk, some minor and others major. I don't know why they can't obtain

valuable data using noninvasive monitoring. It also makes no sense to me why

they would have you off supplements unless they intend to repeat every study

after treatment to evaluate for changes.

To be honest, I've never heard of a study being done using the method you

describe for patients with mitochondrial disease. Is this being conducted under

the context of a formal research study or protocol? If so, I'd like to read the

Informed Consent document. With my girls the studies we do are used to help

monitor their metabolic fuction and I know similar testing is done on children

and adults with metabolic disease at that facility (sometimes as a part of the

diagnostic process and then to monitor after diagnosis). None that I know of

have an invasive component to their testing.

The only time my girls supplements have been stopped temporarily has been prior

to a fresh muscle biopsy.

shaynapearl happyclam8@...> wrote:

Now that I am more confident about the biopsy I'm having on Nov. 7,

I'm concerned about another test I'm getting on Nov. 3. I don't

know the name of the test. They will put a catheter through my neck

into an artery that goes down to my heart. There will be a smaller

line in my wrist. Then, with catheters in place, I will exercise on

a bike for 10 minutes. As I understand it, the purpose of the test

is to measure how much oxygen gets to my muscles. I was told that

it will not influence the treatments my mito doc prescribes for me,

but it will be a factor in the diagnosis.

Have any of you had this test done? If so, how did it go for you?

Apparently, it's a bit riskier than a biopsy. There's a small

chance that they could accidentally hit my lung which would make it

collapse and land me in the hospital for a day or two. But I think

the chance is really small. I'm nervous because it's so different

from any other procedure I've had.

My primary care doc (who is great) would prefer it if I took things

one step at a time—i.e. biopsy first, see what the results are, and

then, if it still seems useful, do the exercise test. However, he

said he would totally understand if I simply wanted to get the whole

thing over with and get as much information as soon as possible. He

says there's no right decision and it's up to me.

I would like to get it over with. But I'm nervous about it and I

wonder if I am letting impatience guide my choices—which isn't

necessarily such a good idea. I would feel better if I heard from

some of you that you had this test done, that it went OK, and that

you thought it was worth it. Alternatively, if you think this test

is overkill at this time, I would like to know that as well. In the

few short weeks that I've been in this group, I've come to have a

lot of respect for how you are all dealing with this disease and for

your knowledge.

If you don't mind my adding one other issue to an already-long note,

I've had to go off my carnitor in order to take these tests. If I

get them both done now, I can go back on the carnitor and stay on

it. If I decide to do the exercise test at a later date, I will

have to go off it for a month again because the carnitor can give

false results. Maybe going off for another month is not a big

deal. But I like the carnitor. It helps.

Thanks so much to anyone who has made it through this long note!

Best wishes to all,

Shayna

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 stroke-like episodes, so I've avoided having a cerebral

angiogram (although it was prescribed twice) because there is

inherently a stroke risk, and it is increased for people who have had

strokes or stroke-like episodes. I actually had my muscle biopsy

after I decided not to have the angiogram, so I was glad I didn't get

the more invasive test.

I have to agree with Joanne, it sounds very invasive - will it lead

to a treatment change or different dx? I was much less afraid of the

biopsy than the angiogram/catheterization. If you will be standing

with this in place, will they have you fully supported in case you

black out or slip? Sounds a bit ominous to me, but if it is

necessary, it is good to confirm it, especially if you have to go off

meds. Did you ask how being on the meds would mess up the results?

Take care,

RH

> Now that I am more confident about the biopsy I'm having on Nov. 7,

> I'm concerned about another test I'm getting on Nov. 3. I don't

> know the name of the test. They will put a catheter through my

neck

> into an artery that goes down to my heart. There will be a smaller

> line in my wrist. Then, with catheters in place, I will exercise

on

> a bike for 10 minutes. As I understand it, the purpose of the test

> is to measure how much oxygen gets to my muscles. I was told that

> it will not influence the treatments my mito doc prescribes for me,

> but it will be a factor in the diagnosis.

>

> Have any of you had this test done? If so, how did it go for you?

>

> Apparently, it's a bit riskier than a biopsy. There's a small

> chance that they could accidentally hit my lung which would make it

> collapse and land me in the hospital for a day or two. But I think

> the chance is really small. I'm nervous because it's so different

> from any other procedure I've had.

>

> My primary care doc (who is great) would prefer it if I took things

> one step at a time—i.e. biopsy first, see what the results are, and

> then, if it still seems useful, do the exercise test. However, he

> said he would totally understand if I simply wanted to get the

whole

> thing over with and get as much information as soon as possible.

He

> says there's no right decision and it's up to me.

>

> I would like to get it over with. But I'm nervous about it and I

> wonder if I am letting impatience guide my choices—which isn't

> necessarily such a good idea. I would feel better if I heard from

> some of you that you had this test done, that it went OK, and that

> you thought it was worth it. Alternatively, if you think this test

> is overkill at this time, I would like to know that as well. In

the

> few short weeks that I've been in this group, I've come to have a

> lot of respect for how you are all dealing with this disease and

for

> your knowledge.

>

> If you don't mind my adding one other issue to an already-long

note,

> I've had to go off my carnitor in order to take these tests. If I

> get them both done now, I can go back on the carnitor and stay on

> it. If I decide to do the exercise test at a later date, I will

> have to go off it for a month again because the carnitor can give

> false results. Maybe going off for another month is not a big

> deal. But I like the carnitor. It helps.

>

> Thanks so much to anyone who has made it through this long note!

>

> Best wishes to all,

> Shayna

>

>

>

>

>

>

>

>

>

>

> 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]

Hi Joanne,

Thanks for the info and for asking good questions. I admit I can't

answer all of them which might be a good reason to postpone or

cancel this test. Here's what I do know: The tests are being done

at Mass General. They are not part of a study. I know for sure

that I had to go off the carnitine before the biopsy and the blood

tests; when I think back to my conversation with the doc, I'm not

sure now if I had to go off it for this test, too, though I thought

so at the time. I don't know enough about all this to know if the

test my doctor is proposing serves the exact same purpose as the

ones your kids have had non-invasively. I'm still learning.

Let's see if anyone else in this group pipes in. Then perhaps I'll

email the questions you are raising to my doc, or, since it could be

hard to reach her in time, I might just cancel the test for now and

ask about it later.

Many thanks,

Shayna

> Now that I am more confident about the biopsy I'm having on Nov.

7,

> I'm concerned about another test I'm getting on Nov. 3. I don't

> know the name of the test. They will put a catheter through my

neck

> into an artery that goes down to my heart. There will be a

smaller

> line in my wrist. Then, with catheters in place, I will exercise

on

> a bike for 10 minutes. As I understand it, the purpose of the

test

> is to measure how much oxygen gets to my muscles. I was told that

> it will not influence the treatments my mito doc prescribes for

me,

> but it will be a factor in the diagnosis.

>

> Have any of you had this test done? If so, how did it go for you?

>

> Apparently, it's a bit riskier than a biopsy. There's a small

> chance that they could accidentally hit my lung which would make

it

> collapse and land me in the hospital for a day or two. But I

think

> the chance is really small. I'm nervous because it's so different

> from any other procedure I've had.

>

> My primary care doc (who is great) would prefer it if I took

things

> one step at a time—i.e. biopsy first, see what the results are,

and

> then, if it still seems useful, do the exercise test. However, he

> said he would totally understand if I simply wanted to get the

whole

> thing over with and get as much information as soon as possible.

He

> says there's no right decision and it's up to me.

>

> I would like to get it over with. But I'm nervous about it and I

> wonder if I am letting impatience guide my choices—which isn't

> necessarily such a good idea. I would feel better if I heard from

> some of you that you had this test done, that it went OK, and that

> you thought it was worth it. Alternatively, if you think this

test

> is overkill at this time, I would like to know that as well. In

the

> few short weeks that I've been in this group, I've come to have a

> lot of respect for how you are all dealing with this disease and

for

> your knowledge.

>

> If you don't mind my adding one other issue to an already-long

note,

> I've had to go off my carnitor in order to take these tests. If I

> get them both done now, I can go back on the carnitor and stay on

> it. If I decide to do the exercise test at a later date, I will

> have to go off it for a month again because the carnitor can give

> false results. Maybe going off for another month is not a big

> deal. But I like the carnitor. It helps.

>

> Thanks so much to anyone who has made it through this long note!

>

> Best wishes to all,

> Shayna

>

>

>

>

>

>

>

>

>

>

> 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]

Thanks, . This is interesting, because even though it sounds

different from what Joanne's kids have done, it is also a lot less

invasive than having the catheter in the artery to the heart.

Still pondering,

Shayna

> Now that I am more confident about the biopsy I'm having on Nov.

7,

> I'm concerned about another test I'm getting on Nov. 3. I don't

> know the name of the test. They will put a catheter through my

neck

> into an artery that goes down to my heart. There will be a

smaller

> line in my wrist. Then, with catheters in place, I will exercise

on

> a bike for 10 minutes. As I understand it, the purpose of the

test

> is to measure how much oxygen gets to my muscles. I was told that

> it will not influence the treatments my mito doc prescribes for

me,

> but it will be a factor in the diagnosis.

>

> Have any of you had this test done? If so, how did it go for you?

>

> Apparently, it's a bit riskier than a biopsy. There's a small

> chance that they could accidentally hit my lung which would make

it

> collapse and land me in the hospital for a day or two. But I

think

> the chance is really small. I'm nervous because it's so different

> from any other procedure I've had.

>

> My primary care doc (who is great) would prefer it if I took

things

> one step at a time—i.e. biopsy first, see what the results are,

and

> then, if it still seems useful, do the exercise test. However, he

> said he would totally understand if I simply wanted to get the

whole

> thing over with and get as much information as soon as possible.

He

> says there's no right decision and it's up to me.

>

> I would like to get it over with. But I'm nervous about it and I

> wonder if I am letting impatience guide my choices—which isn't

> necessarily such a good idea. I would feel better if I heard from

> some of you that you had this test done, that it went OK, and that

> you thought it was worth it. Alternatively, if you think this

test

> is overkill at this time, I would like to know that as well. In

the

> few short weeks that I've been in this group, I've come to have a

> lot of respect for how you are all dealing with this disease and

for

> your knowledge.

>

> If you don't mind my adding one other issue to an already-long

note,

> I've had to go off my carnitor in order to take these tests. If I

> get them both done now, I can go back on the carnitor and stay on

> it. If I decide to do the exercise test at a later date, I will

> have to go off it for a month again because the carnitor can give

> false results. Maybe going off for another month is not a big

> deal. But I like the carnitor. It helps.

>

> Thanks so much to anyone who has made it through this long note!

>

> Best wishes to all,

> Shayna

>

>

>

>

>

>

>

>

>

>

> 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]

It looks like several of you are concerned about this which is

certainly good for me to hear. RH, your question about it leading

to a treatment change or different dx seems quite relevant to me.

My doc said it will not lead to treatment change, but perhaps to a

more specific diagnosis. But I haven't had the biopsy yet and if

that info is informative enough, we might not really need to do

this. But yes, if I should decide to go through with it at some

point, they will offer any back support that I need. I don't have a

stroke history but I would ask for all possible supports anyway.

Best to you,

Shayna

> > Now that I am more confident about the biopsy I'm having on Nov.

7,

> > I'm concerned about another test I'm getting on Nov. 3. I don't

> > know the name of the test. They will put a catheter through my

> neck

> > into an artery that goes down to my heart. There will be a

smaller

> > line in my wrist. Then, with catheters in place, I will

exercise

> on

> > a bike for 10 minutes. As I understand it, the purpose of the

test

> > is to measure how much oxygen gets to my muscles. I was told

that

> > it will not influence the treatments my mito doc prescribes for

me,

> > but it will be a factor in the diagnosis.

> >

> > Have any of you had this test done? If so, how did it go for

you?

> >

> > Apparently, it's a bit riskier than a biopsy. There's a small

> > chance that they could accidentally hit my lung which would make

it

> > collapse and land me in the hospital for a day or two. But I

think

> > the chance is really small. I'm nervous because it's so

different

> > from any other procedure I've had.

> >

> > My primary care doc (who is great) would prefer it if I took

things

> > one step at a time—i.e. biopsy first, see what the results are,

and

> > then, if it still seems useful, do the exercise test. However,

he

> > said he would totally understand if I simply wanted to get the

> whole

> > thing over with and get as much information as soon as

possible.

> He

> > says there's no right decision and it's up to me.

> >

> > I would like to get it over with. But I'm nervous about it and

I

> > wonder if I am letting impatience guide my choices—which isn't

> > necessarily such a good idea. I would feel better if I heard

from

> > some of you that you had this test done, that it went OK, and

that

> > you thought it was worth it. Alternatively, if you think this

test

> > is overkill at this time, I would like to know that as well. In

> the

> > few short weeks that I've been in this group, I've come to have

a

> > lot of respect for how you are all dealing with this disease and

> for

> > your knowledge.

> >

> > If you don't mind my adding one other issue to an already-long

> note,

> > I've had to go off my carnitor in order to take these tests. If

I

> > get them both done now, I can go back on the carnitor and stay

on

> > it. If I decide to do the exercise test at a later date, I will

> > have to go off it for a month again because the carnitor can

give

> > false results. Maybe going off for another month is not a big

> > deal. But I like the carnitor. It helps.

> >

> > Thanks so much to anyone who has made it through this long note!

> >

> > Best wishes to all,

> > Shayna

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > 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]

Hi Joanne,

I had another thought/question about the tests your girls have had

and the one that is being proposed for me. You said their studies

were " anerobic " studies. I'm guessing that my studies would

be " aerobic " studies since I will be exercising during them.

Perhaps that explains some of the difference. Do you think so?

Best,

Shayna

> Now that I am more confident about the biopsy I'm having on Nov.

7,

> I'm concerned about another test I'm getting on Nov. 3. I don't

> know the name of the test. They will put a catheter through my

neck

> into an artery that goes down to my heart. There will be a

smaller

> line in my wrist. Then, with catheters in place, I will exercise

on

> a bike for 10 minutes. As I understand it, the purpose of the

test

> is to measure how much oxygen gets to my muscles. I was told that

> it will not influence the treatments my mito doc prescribes for

me,

> but it will be a factor in the diagnosis.

>

> Have any of you had this test done? If so, how did it go for you?

>

> Apparently, it's a bit riskier than a biopsy. There's a small

> chance that they could accidentally hit my lung which would make

it

> collapse and land me in the hospital for a day or two. But I

think

> the chance is really small. I'm nervous because it's so different

> from any other procedure I've had.

>

> My primary care doc (who is great) would prefer it if I took

things

> one step at a time—i.e. biopsy first, see what the results are,

and

> then, if it still seems useful, do the exercise test. However, he

> said he would totally understand if I simply wanted to get the

whole

> thing over with and get as much information as soon as possible.

He

> says there's no right decision and it's up to me.

>

> I would like to get it over with. But I'm nervous about it and I

> wonder if I am letting impatience guide my choices—which isn't

> necessarily such a good idea. I would feel better if I heard from

> some of you that you had this test done, that it went OK, and that

> you thought it was worth it. Alternatively, if you think this

test

> is overkill at this time, I would like to know that as well. In

the

> few short weeks that I've been in this group, I've come to have a

> lot of respect for how you are all dealing with this disease and

for

> your knowledge.

>

> If you don't mind my adding one other issue to an already-long

note,

> I've had to go off my carnitor in order to take these tests. If I

> get them both done now, I can go back on the carnitor and stay on

> it. If I decide to do the exercise test at a later date, I will

> have to go off it for a month again because the carnitor can give

> false results. Maybe going off for another month is not a big

> deal. But I like the carnitor. It helps.

>

> Thanks so much to anyone who has made it through this long note!

>

> Best wishes to all,

> Shayna

>

>

>

>

>

>

>

>

>

>

> 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]

Shayna

I had an exercise test, but it didn't involve the invasiveness of the

test you mentioned. It did involve tubes down my nose into my stomach

to test the muscles used in breathing, but this is not always a part

of the test. I exercised on a bike while breathing into a tube and

pointing my physical feelings every 30 seconds. I did have an artirial

blood gas drawn before and after the test and had heart leads. This

test showed several things, but it was not diagnostic - just showed I

had some findings that were found in mito and other things.

I'm not sure this will help you or not, but I didn't have to go off

meds for this one. My neuro felt I should be tested as I was on a

normal day with normal meds.

laurie

> Now that I am more confident about the biopsy I'm having on Nov. 7,

> I'm concerned about another test I'm getting on Nov. 3. I don't

> know the name of the test. They will put a catheter through my neck

> into an artery that goes down to my heart. There will be a smaller

> line in my wrist. Then, with catheters in place, I will exercise on

> a bike for 10 minutes. As I understand it, the purpose of the test

> is to measure how much oxygen gets to my muscles. I was told that

> it will not influence the treatments my mito doc prescribes for me,

> but it will be a factor in the diagnosis.

>

> Have any of you had this test done? If so, how did it go for you?

>

> Apparently, it's a bit riskier than a biopsy. There's a small

> chance that they could accidentally hit my lung which would make it

> collapse and land me in the hospital for a day or two. But I think

> the chance is really small. I'm nervous because it's so different

> from any other procedure I've had.

>

> My primary care doc (who is great) would prefer it if I took things

> one step at a time—i.e. biopsy first, see what the results are, and

> then, if it still seems useful, do the exercise test. However, he

> said he would totally understand if I simply wanted to get the whole

> thing over with and get as much information as soon as possible. He

> says there's no right decision and it's up to me.

>

> I would like to get it over with. But I'm nervous about it and I

> wonder if I am letting impatience guide my choices—which isn't

> necessarily such a good idea. I would feel better if I heard from

> some of you that you had this test done, that it went OK, and that

> you thought it was worth it. Alternatively, if you think this test

> is overkill at this time, I would like to know that as well. In the

> few short weeks that I've been in this group, I've come to have a

> lot of respect for how you are all dealing with this disease and for

> your knowledge.

>

> If you don't mind my adding one other issue to an already-long note,

> I've had to go off my carnitor in order to take these tests. If I

> get them both done now, I can go back on the carnitor and stay on

> it. If I decide to do the exercise test at a later date, I will

> have to go off it for a month again because the carnitor can give

> false results. Maybe going off for another month is not a big

> deal. But I like the carnitor. It helps.

>

> Thanks so much to anyone who has made it through this long note!

>

> Best wishes to all,

> Shayna

>

>

>

>

>

>

>

>

>

>

> 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]

They measure their values before exercise (at rest),

during exerciuse, when the exercise is stopped, 5

minutes after, 15 minutes after and 6 hours after. So

it actually measures both.

--- shaynapearl happyclam8@...> wrote:

> Hi Joanne,

> I had another thought/question about the tests your

> girls have had

> and the one that is being proposed for me. You said

> their studies

> were " anerobic " studies. I'm guessing that my

> studies would

> be " aerobic " studies since I will be exercising

> during them.

> Perhaps that explains some of the difference. Do you

> think so?

> Best,

> Shayna

>

>

> > Now that I am more confident about the biopsy I'm

> having on Nov.

> 7,

> > I'm concerned about another test I'm getting on

> Nov. 3. I don't

> > know the name of the test. They will put a

> catheter through my

> neck

> > into an artery that goes down to my heart. There

> will be a

> smaller

> > line in my wrist. Then, with catheters in place,

> I will exercise

> on

> > a bike for 10 minutes. As I understand it, the

> purpose of the

> test

> > is to measure how much oxygen gets to my muscles.

> I was told that

> > it will not influence the treatments my mito doc

> prescribes for

> me,

> > but it will be a factor in the diagnosis.

> >

> > Have any of you had this test done? If so, how

> did it go for you?

> >

> > Apparently, it's a bit riskier than a biopsy.

> There's a small

> > chance that they could accidentally hit my lung

> which would make

> it

> > collapse and land me in the hospital for a day or

> two. But I

> think

> > the chance is really small. I'm nervous because

> it's so different

> > from any other procedure I've had.

> >

> > My primary care doc (who is great) would prefer it

> if I took

> things

> > one step at a time—i.e. biopsy first, see what the

> results are,

> and

> > then, if it still seems useful, do the exercise

> test. However, he

> > said he would totally understand if I simply

> wanted to get the

> whole

> > thing over with and get as much information as

> soon as possible.

> He

> > says there's no right decision and it's up to me.

> >

> > I would like to get it over with. But I'm nervous

> about it and I

> > wonder if I am letting impatience guide my

> choices—which isn't

> > necessarily such a good idea. I would feel better

> if I heard from

> > some of you that you had this test done, that it

> went OK, and that

> > you thought it was worth it. Alternatively, if

> you think this

> test

> > is overkill at this time, I would like to know

> that as well. In

> the

> > few short weeks that I've been in this group, I've

> come to have a

> > lot of respect for how you are all dealing with

> this disease and

> for

> > your knowledge.

> >

> > If you don't mind my adding one other issue to an

> already-long

> note,

> > I've had to go off my carnitor in order to take

> these tests. If I

> > get them both done now, I can go back on the

> carnitor and stay on

> > it. If I decide to do the exercise test at a

> later date, I will

> > have to go off it for a month again because the

> carnitor can give

> > false results. Maybe going off for another month

> is not a big

> > deal. But I like the carnitor. It helps.

> >

> > Thanks so much to anyone who has made it through

> this long note!

> >

> > Best wishes to all,

> > Shayna

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > 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]

You should NOT need testign that is this invasive to

obtain support for your back. If your back needs

support, it needs support. Period end of story. If

you have the biopsy with positive results, that is

further indication that back supports (and other types

of syupport) may be indicated. In regards to overall

treatment, the invasive studies would not likely be

cause for a change. Studies of that nature are just

indicative of how well your body utilizes oxygen, etc

with activity.

--- shaynapearl happyclam8@...> wrote:

> It looks like several of you are concerned about

> this which is

> certainly good for me to hear. RH, your question

> about it leading

> to a treatment change or different dx seems quite

> relevant to me.

> My doc said it will not lead to treatment change,

> but perhaps to a

> more specific diagnosis. But I haven't had the

> biopsy yet and if

> that info is informative enough, we might not really

> need to do

> this. But yes, if I should decide to go through

> with it at some

> point, they will offer any back support that I need.

> I don't have a

> stroke history but I would ask for all possible

> supports anyway.

> Best to you,

> Shayna

>

>

>

> > > Now that I am more confident about the biopsy

> I'm having on Nov.

> 7,

> > > I'm concerned about another test I'm getting on

> Nov. 3. I don't

> > > know the name of the test. They will put a

> catheter through my

> > neck

> > > into an artery that goes down to my heart.

> There will be a

> smaller

> > > line in my wrist. Then, with catheters in

> place, I will

> exercise

> > on

> > > a bike for 10 minutes. As I understand it, the

> purpose of the

> test

> > > is to measure how much oxygen gets to my

> muscles. I was told

> that

> > > it will not influence the treatments my mito doc

> prescribes for

> me,

> > > but it will be a factor in the diagnosis.

> > >

> > > Have any of you had this test done? If so, how

> did it go for

> you?

> > >

> > > Apparently, it's a bit riskier than a biopsy.

> There's a small

> > > chance that they could accidentally hit my lung

> which would make

> it

> > > collapse and land me in the hospital for a day

> or two. But I

> think

> > > the chance is really small. I'm nervous because

> it's so

> different

> > > from any other procedure I've had.

> > >

> > > My primary care doc (who is great) would prefer

> it if I took

> things

> > > one step at a time—i.e. biopsy first, see what

> the results are,

> and

> > > then, if it still seems useful, do the exercise

> test. However,

> he

> > > said he would totally understand if I simply

> wanted to get the

> > whole

> > > thing over with and get as much information as

> soon as

> possible.

> > He

> > > says there's no right decision and it's up to

> me.

> > >

> > > I would like to get it over with. But I'm

> nervous about it and

> I

> > > wonder if I am letting impatience guide my

> choices—which isn't

> > > necessarily such a good idea. I would feel

> better if I heard

> from

> > > some of you that you had this test done, that it

> went OK, and

> that

> > > you thought it was worth it. Alternatively, if

> you think this

> test

> > > is overkill at this time, I would like to know

> that

=== message truncated ===

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

Just to clarify, there is aerobic exercise and anaerobic exercise.

Aerobic exercise uses inspired oxygen and takes place during sustained

vigorous athletic activity. Aerobic exercise depends primarily on fat

metabolism for fuel.

Anaerobic exercise does not use inspired oxygen and is usually characterized

as short bursts of vigorous activity. Anaerobic exercise relies primarily on

carbohydrate metabolism for fuel.

Diagnostic exercise tests may be either aerobic or anaerobic, depending on

the protocol.

Barbara

>You said their studies

> were " anerobic " studies. I'm guessing that my studies would

> be " aerobic " studies since I will be exercising during them.

> Perhaps that explains some of the difference. Do you think so?

[Guest guest]

Excellent point, and very important in my case. I can tolerate

aerobic exercise, but not anaerobic exercise. I was able to do a

cardiac stress test after it was clarified that I would be targeting

a high percentage of my maximum heart rate, where my body does well.

I play sports, but have trouble dragging my equipment around, luckily

adrenalin from being nervous about playing team sports helps me a

bit. Basically people don't believe I am sick because I can play

sports, but I also have to crawl up stairs and get tired when

carrying my 2-year-old more than a few feet. Someone suggested I run

everywhere

Currently my theory is that I do have a carb metabolism problem, as I

also do well on an Atkins-type diet. Is it linked directly to my

mito? I don't know, hopefully we might find out.

Take care,

RH

>

> Just to clarify, there is aerobic exercise and anaerobic exercise.

>

> Aerobic exercise uses inspired oxygen and takes place during

sustained

> vigorous athletic activity. Aerobic exercise depends primarily on

fat

> metabolism for fuel.

>

> Anaerobic exercise does not use inspired oxygen and is usually

characterized

> as short bursts of vigorous activity. Anaerobic exercise relies

primarily on

> carbohydrate metabolism for fuel.

>

> Diagnostic exercise tests may be either aerobic or anaerobic,

depending on

> the protocol.

>

> Barbara

>

> >You said their studies

> > were " anerobic " studies. I'm guessing that my studies would

> > be " aerobic " studies since I will be exercising during them.

> > Perhaps that explains some of the difference. Do you think so?

>

[Guest guest]

Hi, Shana

I am just writing this quickly & have not read all the responses to you

already - maybe someone has already mentioned this thought. I would

just consider that every time you have a procedure, especially if it is

invasive, there may be considerable physiologic stress on your body,

and mito bodies need more recovery time. So, it might not be such a

good idea to have both done so close in time. I know anesthesia

bothers me, I have sometimes questioned contrast media, just the

surgery of biopsy is an issue, possible infection, which can lay us

lower than healthy people, and just going through the hassles of

getting something done can tap our reserves. So, while I might want

both done, I personally would space them out, and I guess I would make

the biopsy my first priority, but that is based on limited knowledge of

the other test. Best of luck.

Sunny

> Now that I am more confident about the biopsy I'm having on Nov. 7,

> I'm concerned about another test I'm getting on Nov. 3.  I don't

> know the name of the test.  They will put a catheter through my neck

> into an artery that goes down to my heart.  There will be a smaller

> line in my wrist.  Then, with catheters in place, I will exercise on

> a bike for 10 minutes.  As I understand it, the purpose of the test

> is to measure how much oxygen gets to my muscles.  I was told that

> it will not influence the treatments my mito doc prescribes for me,

> but it will be a factor in the diagnosis.

>

> Have any of you had this test done?  If so, how did it go for you?

>

> Apparently, it's a bit riskier than a biopsy.  There's a small

> chance that they could accidentally hit my lung which would make it

> collapse and land me in the hospital for a day or two.  But I think

> the chance is really small.  I'm nervous because it's so different

> from any other procedure I've had.

>

> My primary care doc (who is great) would prefer it if I took things

> one step at a time—i.e. biopsy first, see what the results are, and

> then, if it still seems useful, do the exercise test.  However, he

> said he would totally understand if I simply wanted to get the whole

> thing over with and get as much information as soon as possible.  He

> says there's no right decision and it's up to me.

>

> I would like to get it over with.  But I'm nervous about it and I

> wonder if I am letting impatience guide my choices—which isn't

> necessarily such a good idea.  I would feel better if I heard from

> some of you that you had this test done, that it went OK, and that

> you thought it was worth it.  Alternatively, if you think this test

> is overkill at this time, I would like to know that as well.  In the

> few short weeks that I've been in this group, I've come to have a

> lot of respect for how you are all dealing with this disease and for

> your knowledge.

>

> If you don't mind my adding one other issue to an already-long note,

> I've had to go off my carnitor in order to take these tests.  If I

> get them both done now, I can go back on the carnitor and stay on

> it.  If I decide to do the exercise test at a later date, I will

> have to go off it for a month again because the carnitor can give

> false results.  Maybe going off for another month is not a big

> deal.  But I like the carnitor.  It helps.

>

> Thanks so much to anyone who has made it through this long note!

>

> Best wishes to all,

> Shayna

>

>

>

>

>

>

>

>

>

>

> 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 am just the opposite with doing well with short bursts of anything but any

length to it and im done.

If I do a strength test at the doctors office I look pretty darn good but if

I repeat the test three or more times I cant do it so I guess its the fats I

dont use so well then

[Guest guest]

Yep, this would be very typical of the inborn errors in fat metabolism.

B

> Re: Has anyone had this test done?

>

> I am just the opposite with doing well with short bursts of anything but

any

> length to it and im done.

> If I do a strength test at the doctors office I look pretty darn good but

if

> I repeat the test three or more times I cant do it so I guess its the

fats I

> dont use so well then

>