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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

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Share on other sites

Exercise tests can include simple things like repeatedly making a

fist or climbing up and down a small flight of stairs. More

sophisticated tests include maximal bicycle exercise testing that

analyzes gas exchange and cardiac output or Doppler ultrasound

measures of blood flow in exercising forearm. There is also strength

testing on Cybex ergometer.

In the US Haller MD is the expert who focuses on exercise

testing in metabolic muscle disorders. In Canada, Mark Tarnopolsky

MD PhD has an interest in exercise and most likely does exercise

testing with his patients.

Pasted below, diagnostic information on the forearm ischemic

exercise test and other exercise tests for metabolic muscle disease.

Barbara

---------------------------

http://www.emedicine.com/neuro/topic672.htm

Forearm ischemic exercise test: McArdle introduced this test in

1951. It is a useful screen to detect a possible enzymatic defect in

the glycogenolytic and glycolysis pathways.

In healthy subjects, lactate level should increase to 3-5 times the

basal level in the first 2 samples after exercise and then decrease

gradually to the baseline.

Ammonia level also should increase after exercise. Ammonia level is

useful not only as a monitor of sufficient exercise, but also as a

test for myoadenylate deaminase deficiency (MAD deficiency).

In glycogen storage diseases, such as McArdle disease, serum lactate

levels do not increase after exercise (ie, flat lactate curve),

while in lipid storage diseases, both lactate and ammonia levels

increase in a normal fashion.

In MAD deficiency, ammonia does not increase (ie, flat ammonia

curve).

On rare occasions, 2 enzyme defects are found in the same patient,

such as myophosphorylase or phosphofructokinase defect along with

myoadenylate deaminase defect. The latter usually is due to poor

effort during exercise.

---------------

Ann Neurol. 2003 Oct;54(4):539-42.

A diagnostic cycle test for McArdle's disease.

Vissing J, Haller RG.

Department of Neurology and Copenhagen Muscle Research Center,

National University Hospital, Rigshospitalet, Copenhagen, Denmark.

vissing@...

We investigated whether the second wind phenomenon (ie, a decrease

in heart rate and perceived exertion during exercise) is

pathognomonic for McArdle's disease. Twenty-four patients with

McArdle's disease, 17 healthy subjects, and 25 patients with other

inborn errors of muscle metabolism cycled a constant workload for 15

minutes. In McArdle's disease patients, heart rate consistently

decreased by 35 +/- 3 beats per minute from the 7(th) to the 15(th)

minute of exercise, whereas heart rate increased progressively with

exercise in all 42 control subjects. The findings indicate that

cycling at a moderate, constant workload provides a specific,

sensitive, and simple diagnostic test for McArdle's disease

-----------------------

Neurology. 2002 May 28;58(10):1533-8.

A forearm exercise screening test for mitochondrial myopathy.

Jensen TD, Kazemi-Esfarjani P, Skomorowska E, Vissing J.

Copenhagen Muscle Research Center, Department of Neurology, National

University Hospital, Rigshospitalet, Copenhagen, Denmark.

BACKGROUND: The authors hypothesized that impaired oxygen extraction

in mitochondrial myopathy (MM) results in a high oxygen saturation

in venous effluent blood from working muscle and that this

phenomenon can be used as a diagnostic tool for MM. METHODS: Twelve

patients with MM, 10 patients with muscular dystrophy, and 12

healthy subjects were studied. All subjects performed intermittent

static handgrip exercise (1/2 Hz) at 40% of maximal voluntary

contraction (MVC) for 3 minutes. Cubital venous oxygen saturation

and brachial artery flow were measured in the exercised arm.

RESULTS: Exercise-induced venous oxygen desaturation was smaller in

patients with MM (Delta - 7 +/- 5%) than in subjects with muscular

dystrophy (Delta - 38 +/- 2%; p = 0.00001) and healthy subjects

(Delta - 43 +/- 2%; p = 0.0000002). MVC and exercise blood flow were

similar in patients with MM (18 +/- 3 kg; 436 +/- 65 mL/min) and

patients with muscular dystrophy (15 +/- 3 kg; 460 +/- 85 mL/min),

but were higher in healthy subjects (32 +/- 4 kg; 630 +/- 58 mL/min;

p < 0.03). In seven patients with MM and seven patients with McArdle

disease, studied with a slightly different protocol, exercise-

induced oxygen desaturation was also impaired in MM (Delta - +/- 5%)

compared with McArdle disease (Delta - 26 +/- 3%; p = 0.007).

CONCLUSION: Oxygen desaturation in venous blood from exercising

muscle is markedly lower in patients with mitochondrial myopathy

than in subjects with other muscle diseases and healthy subjects,

suggesting that a forearm exercise test can be a diagnostic

screening tool for mitochondrial myopathy.

----------------

> 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

Link to comment
Share on other sites

Exercise tests can include simple things like repeatedly making a

fist or climbing up and down a small flight of stairs. More

sophisticated tests include maximal bicycle exercise testing that

analyzes gas exchange and cardiac output or Doppler ultrasound

measures of blood flow in exercising forearm. There is also strength

testing on Cybex ergometer.

In the US Haller MD is the expert who focuses on exercise

testing in metabolic muscle disorders. In Canada, Mark Tarnopolsky

MD PhD has an interest in exercise and most likely does exercise

testing with his patients.

Pasted below, diagnostic information on the forearm ischemic

exercise test and other exercise tests for metabolic muscle disease.

Barbara

---------------------------

http://www.emedicine.com/neuro/topic672.htm

Forearm ischemic exercise test: McArdle introduced this test in

1951. It is a useful screen to detect a possible enzymatic defect in

the glycogenolytic and glycolysis pathways.

In healthy subjects, lactate level should increase to 3-5 times the

basal level in the first 2 samples after exercise and then decrease

gradually to the baseline.

Ammonia level also should increase after exercise. Ammonia level is

useful not only as a monitor of sufficient exercise, but also as a

test for myoadenylate deaminase deficiency (MAD deficiency).

In glycogen storage diseases, such as McArdle disease, serum lactate

levels do not increase after exercise (ie, flat lactate curve),

while in lipid storage diseases, both lactate and ammonia levels

increase in a normal fashion.

In MAD deficiency, ammonia does not increase (ie, flat ammonia

curve).

On rare occasions, 2 enzyme defects are found in the same patient,

such as myophosphorylase or phosphofructokinase defect along with

myoadenylate deaminase defect. The latter usually is due to poor

effort during exercise.

---------------

Ann Neurol. 2003 Oct;54(4):539-42.

A diagnostic cycle test for McArdle's disease.

Vissing J, Haller RG.

Department of Neurology and Copenhagen Muscle Research Center,

National University Hospital, Rigshospitalet, Copenhagen, Denmark.

vissing@...

We investigated whether the second wind phenomenon (ie, a decrease

in heart rate and perceived exertion during exercise) is

pathognomonic for McArdle's disease. Twenty-four patients with

McArdle's disease, 17 healthy subjects, and 25 patients with other

inborn errors of muscle metabolism cycled a constant workload for 15

minutes. In McArdle's disease patients, heart rate consistently

decreased by 35 +/- 3 beats per minute from the 7(th) to the 15(th)

minute of exercise, whereas heart rate increased progressively with

exercise in all 42 control subjects. The findings indicate that

cycling at a moderate, constant workload provides a specific,

sensitive, and simple diagnostic test for McArdle's disease

-----------------------

Neurology. 2002 May 28;58(10):1533-8.

A forearm exercise screening test for mitochondrial myopathy.

Jensen TD, Kazemi-Esfarjani P, Skomorowska E, Vissing J.

Copenhagen Muscle Research Center, Department of Neurology, National

University Hospital, Rigshospitalet, Copenhagen, Denmark.

BACKGROUND: The authors hypothesized that impaired oxygen extraction

in mitochondrial myopathy (MM) results in a high oxygen saturation

in venous effluent blood from working muscle and that this

phenomenon can be used as a diagnostic tool for MM. METHODS: Twelve

patients with MM, 10 patients with muscular dystrophy, and 12

healthy subjects were studied. All subjects performed intermittent

static handgrip exercise (1/2 Hz) at 40% of maximal voluntary

contraction (MVC) for 3 minutes. Cubital venous oxygen saturation

and brachial artery flow were measured in the exercised arm.

RESULTS: Exercise-induced venous oxygen desaturation was smaller in

patients with MM (Delta - 7 +/- 5%) than in subjects with muscular

dystrophy (Delta - 38 +/- 2%; p = 0.00001) and healthy subjects

(Delta - 43 +/- 2%; p = 0.0000002). MVC and exercise blood flow were

similar in patients with MM (18 +/- 3 kg; 436 +/- 65 mL/min) and

patients with muscular dystrophy (15 +/- 3 kg; 460 +/- 85 mL/min),

but were higher in healthy subjects (32 +/- 4 kg; 630 +/- 58 mL/min;

p < 0.03). In seven patients with MM and seven patients with McArdle

disease, studied with a slightly different protocol, exercise-

induced oxygen desaturation was also impaired in MM (Delta - +/- 5%)

compared with McArdle disease (Delta - 26 +/- 3%; p = 0.007).

CONCLUSION: Oxygen desaturation in venous blood from exercising

muscle is markedly lower in patients with mitochondrial myopathy

than in subjects with other muscle diseases and healthy subjects,

suggesting that a forearm exercise test can be a diagnostic

screening tool for mitochondrial myopathy.

----------------

> 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

Link to comment
Share on other sites

Exercise tests can include simple things like repeatedly making a

fist or climbing up and down a small flight of stairs. More

sophisticated tests include maximal bicycle exercise testing that

analyzes gas exchange and cardiac output or Doppler ultrasound

measures of blood flow in exercising forearm. There is also strength

testing on Cybex ergometer.

In the US Haller MD is the expert who focuses on exercise

testing in metabolic muscle disorders. In Canada, Mark Tarnopolsky

MD PhD has an interest in exercise and most likely does exercise

testing with his patients.

Pasted below, diagnostic information on the forearm ischemic

exercise test and other exercise tests for metabolic muscle disease.

Barbara

---------------------------

http://www.emedicine.com/neuro/topic672.htm

Forearm ischemic exercise test: McArdle introduced this test in

1951. It is a useful screen to detect a possible enzymatic defect in

the glycogenolytic and glycolysis pathways.

In healthy subjects, lactate level should increase to 3-5 times the

basal level in the first 2 samples after exercise and then decrease

gradually to the baseline.

Ammonia level also should increase after exercise. Ammonia level is

useful not only as a monitor of sufficient exercise, but also as a

test for myoadenylate deaminase deficiency (MAD deficiency).

In glycogen storage diseases, such as McArdle disease, serum lactate

levels do not increase after exercise (ie, flat lactate curve),

while in lipid storage diseases, both lactate and ammonia levels

increase in a normal fashion.

In MAD deficiency, ammonia does not increase (ie, flat ammonia

curve).

On rare occasions, 2 enzyme defects are found in the same patient,

such as myophosphorylase or phosphofructokinase defect along with

myoadenylate deaminase defect. The latter usually is due to poor

effort during exercise.

---------------

Ann Neurol. 2003 Oct;54(4):539-42.

A diagnostic cycle test for McArdle's disease.

Vissing J, Haller RG.

Department of Neurology and Copenhagen Muscle Research Center,

National University Hospital, Rigshospitalet, Copenhagen, Denmark.

vissing@...

We investigated whether the second wind phenomenon (ie, a decrease

in heart rate and perceived exertion during exercise) is

pathognomonic for McArdle's disease. Twenty-four patients with

McArdle's disease, 17 healthy subjects, and 25 patients with other

inborn errors of muscle metabolism cycled a constant workload for 15

minutes. In McArdle's disease patients, heart rate consistently

decreased by 35 +/- 3 beats per minute from the 7(th) to the 15(th)

minute of exercise, whereas heart rate increased progressively with

exercise in all 42 control subjects. The findings indicate that

cycling at a moderate, constant workload provides a specific,

sensitive, and simple diagnostic test for McArdle's disease

-----------------------

Neurology. 2002 May 28;58(10):1533-8.

A forearm exercise screening test for mitochondrial myopathy.

Jensen TD, Kazemi-Esfarjani P, Skomorowska E, Vissing J.

Copenhagen Muscle Research Center, Department of Neurology, National

University Hospital, Rigshospitalet, Copenhagen, Denmark.

BACKGROUND: The authors hypothesized that impaired oxygen extraction

in mitochondrial myopathy (MM) results in a high oxygen saturation

in venous effluent blood from working muscle and that this

phenomenon can be used as a diagnostic tool for MM. METHODS: Twelve

patients with MM, 10 patients with muscular dystrophy, and 12

healthy subjects were studied. All subjects performed intermittent

static handgrip exercise (1/2 Hz) at 40% of maximal voluntary

contraction (MVC) for 3 minutes. Cubital venous oxygen saturation

and brachial artery flow were measured in the exercised arm.

RESULTS: Exercise-induced venous oxygen desaturation was smaller in

patients with MM (Delta - 7 +/- 5%) than in subjects with muscular

dystrophy (Delta - 38 +/- 2%; p = 0.00001) and healthy subjects

(Delta - 43 +/- 2%; p = 0.0000002). MVC and exercise blood flow were

similar in patients with MM (18 +/- 3 kg; 436 +/- 65 mL/min) and

patients with muscular dystrophy (15 +/- 3 kg; 460 +/- 85 mL/min),

but were higher in healthy subjects (32 +/- 4 kg; 630 +/- 58 mL/min;

p < 0.03). In seven patients with MM and seven patients with McArdle

disease, studied with a slightly different protocol, exercise-

induced oxygen desaturation was also impaired in MM (Delta - +/- 5%)

compared with McArdle disease (Delta - 26 +/- 3%; p = 0.007).

CONCLUSION: Oxygen desaturation in venous blood from exercising

muscle is markedly lower in patients with mitochondrial myopathy

than in subjects with other muscle diseases and healthy subjects,

suggesting that a forearm exercise test can be a diagnostic

screening tool for mitochondrial myopathy.

----------------

> 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

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Share on other sites

-dear Barbara, Thanks for the info. Is MAD a mito disease, because the

abnormality I had on the ischemic arm test was my amonia level did not

rise? Celia-

- In , " wheatchild2 " wrote:

> Exercise tests can include simple things like repeatedly making a

> fist or climbing up and down a small flight of stairs. More

> sophisticated tests include maximal bicycle exercise testing that

> analyzes gas exchange and cardiac output or Doppler ultrasound

> measures of blood flow in exercising forearm. There is also strength

> testing on Cybex ergometer.

>

> In the US Haller MD is the expert who focuses on exercise

> testing in metabolic muscle disorders. In Canada, Mark Tarnopolsky

> MD PhD has an interest in exercise and most likely does exercise

> testing with his patients.

>

> Pasted below, diagnostic information on the forearm ischemic

> exercise test and other exercise tests for metabolic muscle disease.

>

> Barbara

>

> ---------------------------

>

> http://www.emedicine.com/neuro/topic672.htm

>

> Forearm ischemic exercise test: McArdle introduced this test in

> 1951. It is a useful screen to detect a possible enzymatic defect in

> the glycogenolytic and glycolysis pathways.

>

> In healthy subjects, lactate level should increase to 3-5 times the

> basal level in the first 2 samples after exercise and then decrease

> gradually to the baseline.

>

> Ammonia level also should increase after exercise. Ammonia level is

> useful not only as a monitor of sufficient exercise, but also as a

> test for myoadenylate deaminase deficiency (MAD deficiency).

>

> In glycogen storage diseases, such as McArdle disease, serum lactate

> levels do not increase after exercise (ie, flat lactate curve),

> while in lipid storage diseases, both lactate and ammonia levels

> increase in a normal fashion.

>

> In MAD deficiency, ammonia does not increase (ie, flat ammonia

> curve).

>

> On rare occasions, 2 enzyme defects are found in the same patient,

> such as myophosphorylase or phosphofructokinase defect along with

> myoadenylate deaminase defect. The latter usually is due to poor

> effort during exercise.

>

>

>

> ---------------

>

> Ann Neurol. 2003 Oct;54(4):539-42.

> A diagnostic cycle test for McArdle's disease.

>

> Vissing J, Haller RG.

>

> Department of Neurology and Copenhagen Muscle Research Center,

> National University Hospital, Rigshospitalet, Copenhagen, Denmark.

> vissing@r...

>

> We investigated whether the second wind phenomenon (ie, a decrease

> in heart rate and perceived exertion during exercise) is

> pathognomonic for McArdle's disease. Twenty-four patients with

> McArdle's disease, 17 healthy subjects, and 25 patients with other

> inborn errors of muscle metabolism cycled a constant workload for 15

> minutes. In McArdle's disease patients, heart rate consistently

> decreased by 35 +/- 3 beats per minute from the 7(th) to the 15(th)

> minute of exercise, whereas heart rate increased progressively with

> exercise in all 42 control subjects. The findings indicate that

> cycling at a moderate, constant workload provides a specific,

> sensitive, and simple diagnostic test for McArdle's disease

>

> -----------------------

>

> Neurology. 2002 May 28;58(10):1533-8.

> A forearm exercise screening test for mitochondrial myopathy.

>

> Jensen TD, Kazemi-Esfarjani P, Skomorowska E, Vissing J.

>

> Copenhagen Muscle Research Center, Department of Neurology, National

> University Hospital, Rigshospitalet, Copenhagen, Denmark.

>

> BACKGROUND: The authors hypothesized that impaired oxygen extraction

> in mitochondrial myopathy (MM) results in a high oxygen saturation

> in venous effluent blood from working muscle and that this

> phenomenon can be used as a diagnostic tool for MM. METHODS: Twelve

> patients with MM, 10 patients with muscular dystrophy, and 12

> healthy subjects were studied. All subjects performed intermittent

> static handgrip exercise (1/2 Hz) at 40% of maximal voluntary

> contraction (MVC) for 3 minutes. Cubital venous oxygen saturation

> and brachial artery flow were measured in the exercised arm.

> RESULTS: Exercise-induced venous oxygen desaturation was smaller in

> patients with MM (Delta - 7 +/- 5%) than in subjects with muscular

> dystrophy (Delta - 38 +/- 2%; p = 0.00001) and healthy subjects

> (Delta - 43 +/- 2%; p = 0.0000002). MVC and exercise blood flow were

> similar in patients with MM (18 +/- 3 kg; 436 +/- 65 mL/min) and

> patients with muscular dystrophy (15 +/- 3 kg; 460 +/- 85 mL/min),

> but were higher in healthy subjects (32 +/- 4 kg; 630 +/- 58 mL/min;

> p < 0.03). In seven patients with MM and seven patients with McArdle

> disease, studied with a slightly different protocol, exercise-

> induced oxygen desaturation was also impaired in MM (Delta - +/- 5%)

> compared with McArdle disease (Delta - 26 +/- 3%; p = 0.007).

> CONCLUSION: Oxygen desaturation in venous blood from exercising

> muscle is markedly lower in patients with mitochondrial myopathy

> than in subjects with other muscle diseases and healthy subjects,

> suggesting that a forearm exercise test can be a diagnostic

> screening tool for mitochondrial myopathy.

>

>

> ----------------

>

>

>

>

> > 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

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Celia,

Myoadenylate deaminase deficiency is a metabolic disorder but it not

a mito disorder. MAD is the most common metabolic muscle disease.

Paragraph from Dr. Vladutiu: " MAD occurs in every 1 in 50

individuals in the general population and every 1 in 5 individuals

is a carrier for one mutation in the MAD gene. The symptoms are

similar to those of McArdle's disease and CPT II deficiency,

however, not everyone with MAD is symptomatic making it one of the

most puzzling disorders of exercise intolerance. "

I don't know of any other metabolic muscle disease that would

produce a flat ammonia curve, though there may be one. Generally

that finding is considered to mean a very likely diagnosis of

myoadenolate deaminase deficiency. MAD can be confirmed by mutation

screening. I know at least two patients who have had diagnosis

confirmed this way.

I would certainly ask your doctor about mutation screening. That can

be done with blood samples and is simple for the patient.

Here is the OMIM entry for MAD and related disorders.

http://www4.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=102770

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

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Share on other sites

-dear Barbara, thanks again for the info. i have been reading about it

this afternoon. I have seen several people mention this before on the

board- is it possibly related to mitochondrial disease. Would it

explain all my other problems (gut dismotility, cardiac arythmia,

hypothyroid amoung others) can't beleive after all this time this is

an explanation for my musclre weakness/endurance problems, Celia

-- In , " wheatchild2 " wrote:

> Celia,

>

> Myoadenylate deaminase deficiency is a metabolic disorder but it not

> a mito disorder. MAD is the most common metabolic muscle disease.

> Paragraph from Dr. Vladutiu: " MAD occurs in every 1 in 50

> individuals in the general population and every 1 in 5 individuals

> is a carrier for one mutation in the MAD gene. The symptoms are

> similar to those of McArdle's disease and CPT II deficiency,

> however, not everyone with MAD is symptomatic making it one of the

> most puzzling disorders of exercise intolerance. "

>

> I don't know of any other metabolic muscle disease that would

> produce a flat ammonia curve, though there may be one. Generally

> that finding is considered to mean a very likely diagnosis of

> myoadenolate deaminase deficiency. MAD can be confirmed by mutation

> screening. I know at least two patients who have had diagnosis

> confirmed this way.

>

> I would certainly ask your doctor about mutation screening. That can

> be done with blood samples and is simple for the patient.

>

> Here is the OMIM entry for MAD and related disorders.

> http://www4.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=102770

>

> 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

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Share on other sites

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

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