Re: exercise tolerance tests/MAD

[Guest guest]

-Thanks for all your help Barbara, This has been an interesting

finding for me after all this time, although from what I have read

today, MAD exists in various severities. I guess I'll have to research

some more, Celia

-- In , " wheatchild2 " wrote:

> Celia,

>

> I do know of one case of MAD and CPT II deficiency in a child but

> one disease did not cause the other. They were just two co-existing

> primary disorders. Because MAD is fairly common, it is possible that

> it could occur along with other conditions. The MAD patients I know

> did not mention the other symptoms you have, but one had severe bone

> problems and some other symptoms that were probably due to another

> cause. But he was satisfied with the MAD diagnosis and did not

> search further. Sorry, I can't help more, but I haven't read enough

> of the MAD literature to really answer your question.

>

> Take care,

> Barbara

>

>

>

> > > > > > hi groupies, just a quick question about exercise

> tolerance

> > > tests.

> > > > > > What are these tests called? Are there different kinds of

> > > them? Is

> > > > > > checking O2 levels, lactic acid and pyruvate part of them.

> I

> > > had an

> > > > > > abnormal ischemic forearm exercise test years ago (I think

> > > that is

> > > > > > what it was called) and the results are lost somewhere in

> my

> > > file.

> > > > > i

> > > > > > was thinking of asking my PCP to repeat these. Since i

> have

> > > > > basicly

> > > > > > no endurance I figure that's when my problems should show

> up.

> > > Do I

> > > > > > need to be referred to a specialist for them- ex.

> cardiologist,

> > > > > > pulmonologist - which specialty? Can my PCP order them? Is

> the

> > > > > forearm

> > > > > > test still done/ is there an exercise tolerance test when

> one

> > > > > actually

> > > > > > exercises and has the relavent measurements taken. Also, I

> had

> > > > > > pulmonary function tests done years ago also. They were

> > > slightly

> > > > > > abnormal. Would it be a good idea to heave these repeated,

> > > since I

> > > > > am

> > > > > > more symptomatic now? Any help appreciated, Celia

[Guest guest]

-Thanks for all your help Barbara, This has been an interesting

finding for me after all this time, although from what I have read

today, MAD exists in various severities. I guess I'll have to research

some more, Celia

-- In , " wheatchild2 " wrote:

> Celia,

>

> I do know of one case of MAD and CPT II deficiency in a child but

> one disease did not cause the other. They were just two co-existing

> primary disorders. Because MAD is fairly common, it is possible that

> it could occur along with other conditions. The MAD patients I know

> did not mention the other symptoms you have, but one had severe bone

> problems and some other symptoms that were probably due to another

> cause. But he was satisfied with the MAD diagnosis and did not

> search further. Sorry, I can't help more, but I haven't read enough

> of the MAD literature to really answer your question.

>

> Take care,

> Barbara

>

>

>

> > > > > > hi groupies, just a quick question about exercise

> tolerance

> > > tests.

> > > > > > What are these tests called? Are there different kinds of

> > > them? Is

> > > > > > checking O2 levels, lactic acid and pyruvate part of them.

> I

> > > had an

> > > > > > abnormal ischemic forearm exercise test years ago (I think

> > > that is

> > > > > > what it was called) and the results are lost somewhere in

> my

> > > file.

> > > > > i

> > > > > > was thinking of asking my PCP to repeat these. Since i

> have

> > > > > basicly

> > > > > > no endurance I figure that's when my problems should show

> up.

> > > Do I

> > > > > > need to be referred to a specialist for them- ex.

> cardiologist,

> > > > > > pulmonologist - which specialty? Can my PCP order them? Is

> the

> > > > > forearm

> > > > > > test still done/ is there an exercise tolerance test when

> one

> > > > > actually

> > > > > > exercises and has the relavent measurements taken. Also, I

> had

> > > > > > pulmonary function tests done years ago also. They were

> > > slightly

> > > > > > abnormal. Would it be a good idea to heave these repeated,

> > > since I

> > > > > am

> > > > > > more symptomatic now? Any help appreciated, Celia

[Guest guest]

Yes, MAD can vary tremendously. The male patient I mentioned below

was forced to take disability in his mid-40s but that was partly

because his job had pushed him physically for years, and being a

Wayne type, he had tried to keep going. He told me about times

when he was in rhabdomyolysis at work and would go around the corner

where no one would see him and vomit, then go back to work.

Unfortunately, he is paying for that now. Another MAD case I know--a

teenage boy who had some milder symptoms as a child but is now

living a normal active life and can exercise with no symptoms.

Since your ischemic forearm exercise test was done years ago, it may

be that at that time the flat ammonia curve was not yet identified

with MAD deficiency. I don't know when that correlation was

discovered. If so, that could explain why no one followed up in your

case.

Sometimes clues surface in mysterious ways....I hope this leads to

more understanding for you. I know how hard it is not to have a

diagnosis.

Take care,

Barbara

> > > > > > > hi groupies, just a quick question about exercise

> > tolerance

> > > > tests.

> > > > > > > What are these tests called? Are there different kinds

of

> > > > them? Is

> > > > > > > checking O2 levels, lactic acid and pyruvate part of

them.

> > I

> > > > had an

> > > > > > > abnormal ischemic forearm exercise test years ago (I

think

> > > > that is

> > > > > > > what it was called) and the results are lost somewhere

in

> > my

> > > > file.

> > > > > > i

> > > > > > > was thinking of asking my PCP to repeat these. Since

i

> > have

> > > > > > basicly

> > > > > > > no endurance I figure that's when my problems should

show

> > up.

> > > > Do I

> > > > > > > need to be referred to a specialist for them- ex.

> > cardiologist,

> > > > > > > pulmonologist - which specialty? Can my PCP order

them? Is

> > the

> > > > > > forearm

> > > > > > > test still done/ is there an exercise tolerance test

when

> > one

> > > > > > actually

> > > > > > > exercises and has the relavent measurements taken.

Also, I

> > had

> > > > > > > pulmonary function tests done years ago also. They

were

> > > > slightly

> > > > > > > abnormal. Would it be a good idea to heave these

repeated,

> > > > since I

> > > > > > am

> > > > > > > more symptomatic now? Any help appreciated, Celia

[Guest guest]

Yes, MAD can vary tremendously. The male patient I mentioned below

was forced to take disability in his mid-40s but that was partly

because his job had pushed him physically for years, and being a

Wayne type, he had tried to keep going. He told me about times

when he was in rhabdomyolysis at work and would go around the corner

where no one would see him and vomit, then go back to work.

Unfortunately, he is paying for that now. Another MAD case I know--a

teenage boy who had some milder symptoms as a child but is now

living a normal active life and can exercise with no symptoms.

Since your ischemic forearm exercise test was done years ago, it may

be that at that time the flat ammonia curve was not yet identified

with MAD deficiency. I don't know when that correlation was

discovered. If so, that could explain why no one followed up in your

case.

Sometimes clues surface in mysterious ways....I hope this leads to

more understanding for you. I know how hard it is not to have a

diagnosis.

Take care,

Barbara

> > > > > > > hi groupies, just a quick question about exercise

> > tolerance

> > > > tests.

> > > > > > > What are these tests called? Are there different kinds

of

> > > > them? Is

> > > > > > > checking O2 levels, lactic acid and pyruvate part of

them.

> > I

> > > > had an

> > > > > > > abnormal ischemic forearm exercise test years ago (I

think

> > > > that is

> > > > > > > what it was called) and the results are lost somewhere

in

> > my

> > > > file.

> > > > > > i

> > > > > > > was thinking of asking my PCP to repeat these. Since

i

> > have

> > > > > > basicly

> > > > > > > no endurance I figure that's when my problems should

show

> > up.

> > > > Do I

> > > > > > > need to be referred to a specialist for them- ex.

> > cardiologist,

> > > > > > > pulmonologist - which specialty? Can my PCP order

them? Is

> > the

> > > > > > forearm

> > > > > > > test still done/ is there an exercise tolerance test

when

> > one

> > > > > > actually

> > > > > > > exercises and has the relavent measurements taken.

Also, I

> > had

> > > > > > > pulmonary function tests done years ago also. They

were

> > > > slightly

> > > > > > > abnormal. Would it be a good idea to heave these

repeated,

> > > > since I

> > > > > > am

> > > > > > > more symptomatic now? Any help appreciated, Celia

[Guest guest]

-Thanks for the encouragement Barb, celia

-- In , " wheatchild2 " wrote:

> Yes, MAD can vary tremendously. The male patient I mentioned below

> was forced to take disability in his mid-40s but that was partly

> because his job had pushed him physically for years, and being a

> Wayne type, he had tried to keep going. He told me about times

> when he was in rhabdomyolysis at work and would go around the corner

> where no one would see him and vomit, then go back to work.

> Unfortunately, he is paying for that now. Another MAD case I know--a

> teenage boy who had some milder symptoms as a child but is now

> living a normal active life and can exercise with no symptoms.

>

> Since your ischemic forearm exercise test was done years ago, it may

> be that at that time the flat ammonia curve was not yet identified

> with MAD deficiency. I don't know when that correlation was

> discovered. If so, that could explain why no one followed up in your

> case.

>

> Sometimes clues surface in mysterious ways....I hope this leads to

> more understanding for you. I know how hard it is not to have a

> diagnosis.

>

> Take care,

> Barbara

>

>

>

> > > > > > > > hi groupies, just a quick question about exercise

> > > tolerance

> > > > > tests.

> > > > > > > > What are these tests called? Are there different kinds

> of

> > > > > them? Is

> > > > > > > > checking O2 levels, lactic acid and pyruvate part of

> them.

> > > I

> > > > > had an

> > > > > > > > abnormal ischemic forearm exercise test years ago (I

> think

> > > > > that is

> > > > > > > > what it was called) and the results are lost somewhere

> in

> > > my

> > > > > file.

> > > > > > > i

> > > > > > > > was thinking of asking my PCP to repeat these. Since

> i

> > > have

> > > > > > > basicly

> > > > > > > > no endurance I figure that's when my problems should

> show

> > > up.

> > > > > Do I

> > > > > > > > need to be referred to a specialist for them- ex.

> > > cardiologist,

> > > > > > > > pulmonologist - which specialty? Can my PCP order

> them? Is

> > > the

> > > > > > > forearm

> > > > > > > > test still done/ is there an exercise tolerance test

> when

> > > one

> > > > > > > actually

> > > > > > > > exercises and has the relavent measurements taken.

> Also, I

> > > had

> > > > > > > > pulmonary function tests done years ago also. They

> were

> > > > > slightly

> > > > > > > > abnormal. Would it be a good idea to heave these

> repeated,

> > > > > since I

> > > > > > > am

> > > > > > > > more symptomatic now? Any help appreciated, Celia

[Guest guest]

-Thanks for the encouragement Barb, celia

-- In , " wheatchild2 " wrote:

> Yes, MAD can vary tremendously. The male patient I mentioned below

> was forced to take disability in his mid-40s but that was partly

> because his job had pushed him physically for years, and being a

> Wayne type, he had tried to keep going. He told me about times

> when he was in rhabdomyolysis at work and would go around the corner

> where no one would see him and vomit, then go back to work.

> Unfortunately, he is paying for that now. Another MAD case I know--a

> teenage boy who had some milder symptoms as a child but is now

> living a normal active life and can exercise with no symptoms.

>

> Since your ischemic forearm exercise test was done years ago, it may

> be that at that time the flat ammonia curve was not yet identified

> with MAD deficiency. I don't know when that correlation was

> discovered. If so, that could explain why no one followed up in your

> case.

>

> Sometimes clues surface in mysterious ways....I hope this leads to

> more understanding for you. I know how hard it is not to have a

> diagnosis.

>

> Take care,

> Barbara

>

>

>

> > > > > > > > hi groupies, just a quick question about exercise

> > > tolerance

> > > > > tests.

> > > > > > > > What are these tests called? Are there different kinds

> of

> > > > > them? Is

> > > > > > > > checking O2 levels, lactic acid and pyruvate part of

> them.

> > > I

> > > > > had an

> > > > > > > > abnormal ischemic forearm exercise test years ago (I

> think

> > > > > that is

> > > > > > > > what it was called) and the results are lost somewhere

> in

> > > my

> > > > > file.

> > > > > > > i

> > > > > > > > was thinking of asking my PCP to repeat these. Since

> i

> > > have

> > > > > > > basicly

> > > > > > > > no endurance I figure that's when my problems should

> show

> > > up.

> > > > > Do I

> > > > > > > > need to be referred to a specialist for them- ex.

> > > cardiologist,

> > > > > > > > pulmonologist - which specialty? Can my PCP order

> them? Is

> > > the

> > > > > > > forearm

> > > > > > > > test still done/ is there an exercise tolerance test

> when

> > > one

> > > > > > > actually

> > > > > > > > exercises and has the relavent measurements taken.

> Also, I

> > > had

> > > > > > > > pulmonary function tests done years ago also. They

> were

> > > > > slightly

> > > > > > > > abnormal. Would it be a good idea to heave these

> repeated,

> > > > > since I

> > > > > > > am

> > > > > > > > more symptomatic now? Any help appreciated, Celia