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Re: PubMed--benign CPK elevation

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CPK levels are also elevated with a heart attack. That is one of the first

things they check when someone has chest pain. Of course, I have never had

to deal with this and this is just my understanding.

laurie

>

> Reply-To:

> Date: Sun, 17 Oct 2004 15:44:48 -0000

> To:

> Subject: PubMed--benign CPK elevation

>

>

> There are some references to benign CPK/CK elevations in PubMed, a

> database of medical journals. You can search PubMed from this page:

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

>

> Here are two quotes from a case of drug-induced CPK elevations:

>

> 1. " Nonetheless, none of the 16 patients with the CPK elevations

> developed severe conditions such as rhabdomyolysis despite an

> absence of therapeutic intervention, and their CPK elevations were

> proven to be benign. "

>

> 2. " Patients engaging in more physical activity or receiving higher

> neuroleptic doses are at greater risk of developing such CPK

> elevations. However, most of these increases are benign, and it is

> not considered necessary to treat them. "

>

> There are also references to benign CPK/CK elevations in patients

> following heart surgery. In these papers, one- to five-fold

> increases in CPK/CK were considered benign. Generally that would

> mean under 1,000.

>

> Just to add that the label " benign " as applied to muscle disease is

> at least partly in the eye of the beholder. When I first went to the

> NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

> benign " disease and he repeated this on several occasions. Another

> CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

> disorder [CPT deficiency] has even been called " benign " in some

> scientific reports which could not be farther from the truth among

> individuals who have experienced life-threatening kidney failure

> following a severe episode of rhabdomyolysis (trigger-induced muscle

> breakdown). "

> Quote from: http://www.fodsupport.org/cpt2.htm

>

> Sometimes it takes time to find a doctor who understands. I had

> symptoms for 19 years before I had a diagnosis. Most people don't

> have to wait that long now because there is more awareness of these

> disorders. I sure hope this happens sooner rather than later for

> you!

>

> Take care,

> Barbara

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

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You're right! The enzyme creatine kinase is found in skeletal and

cardiac muscle, as well as brain tissue. The specific CK found in

each tissue varies and the three subtypes are known as:

CK-MM (skeletal muscle)

CK-MB (cardiac muscle)

CK-BB (brain)

Each fraction can be measured so they can determine the source of

the elevation.

B

> CPK levels are also elevated with a heart attack. That is one of

the first

> things they check when someone has chest pain. Of course, I have

never had

> to deal with this and this is just my understanding.

>

> laurie

>

> > From: " wheatchild2 "

> > Reply-To:

> > Date: Sun, 17 Oct 2004 15:44:48 -0000

> > To:

> > Subject: PubMed--benign CPK elevation

> >

> >

> > There are some references to benign CPK/CK elevations in PubMed,

a

> > database of medical journals. You can search PubMed from this

page:

> > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

> >

> > Here are two quotes from a case of drug-induced CPK elevations:

> >

> > 1. " Nonetheless, none of the 16 patients with the CPK elevations

> > developed severe conditions such as rhabdomyolysis despite an

> > absence of therapeutic intervention, and their CPK elevations

were

> > proven to be benign. "

> >

> > 2. " Patients engaging in more physical activity or receiving

higher

> > neuroleptic doses are at greater risk of developing such CPK

> > elevations. However, most of these increases are benign, and it

is

> > not considered necessary to treat them. "

> >

> > There are also references to benign CPK/CK elevations in patients

> > following heart surgery. In these papers, one- to five-fold

> > increases in CPK/CK were considered benign. Generally that would

> > mean under 1,000.

> >

> > Just to add that the label " benign " as applied to muscle disease

is

> > at least partly in the eye of the beholder. When I first went to

the

> > NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

> > benign " disease and he repeated this on several occasions.

Another

> > CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

> > disorder [CPT deficiency] has even been called " benign " in some

> > scientific reports which could not be farther from the truth

among

> > individuals who have experienced life-threatening kidney failure

> > following a severe episode of rhabdomyolysis (trigger-induced

muscle

> > breakdown). "

> > Quote from: http://www.fodsupport.org/cpt2.htm

> >

> > Sometimes it takes time to find a doctor who understands. I had

> > symptoms for 19 years before I had a diagnosis. Most people don't

> > have to wait that long now because there is more awareness of

these

> > disorders. I sure hope this happens sooner rather than later for

> > you!

> >

> > Take care,

> > Barbara

> >

> >

> >

> >

> >

> >

> >

> >

> > 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.

> >

> >

> >

> >

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when these levels are elevated with a suspected heart

attack, they then do a specific enzyme test that looks

for the special enzyme the only heart muscle produces,

this is not a quick test, many times it shows up a few

days later. there are 2 tests one called Cardiac

troponin and the other Cardiac enzyme. I had this done

last March when I had chest pain, and I told the Dr's

that I have a muscle disorder, my Dr said, they do this

test routinely with a suspected heart attack, but it

was good practice for me to advise Dr's of this muscle

problem.

markb

--- Laureta Fitzgerald lfitzger@...>

wrote:

> CPK levels are also elevated with a heart attack.

> That is one of the first

> things they check when someone has chest pain. Of

> course, I have never had

> to deal with this and this is just my understanding.

>

> laurie

__________________________________________________

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Yes that is true, but they can fraction it and tell if it is coming from

cardiac muscle or skeletal muscle.

Smiles,

PubMed--benign CPK elevation

> >

> >

> > There are some references to benign CPK/CK elevations in PubMed, a

> > database of medical journals. You can search PubMed from this page:

> > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

> >

> > Here are two quotes from a case of drug-induced CPK elevations:

> >

> > 1. " Nonetheless, none of the 16 patients with the CPK elevations

> > developed severe conditions such as rhabdomyolysis despite an

> > absence of therapeutic intervention, and their CPK elevations were

> > proven to be benign. "

> >

> > 2. " Patients engaging in more physical activity or receiving higher

> > neuroleptic doses are at greater risk of developing such CPK

> > elevations. However, most of these increases are benign, and it is

> > not considered necessary to treat them. "

> >

> > There are also references to benign CPK/CK elevations in patients

> > following heart surgery. In these papers, one- to five-fold

> > increases in CPK/CK were considered benign. Generally that would

> > mean under 1,000.

> >

> > Just to add that the label " benign " as applied to muscle disease is

> > at least partly in the eye of the beholder. When I first went to the

> > NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

> > benign " disease and he repeated this on several occasions. Another

> > CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

> > disorder [CPT deficiency] has even been called " benign " in some

> > scientific reports which could not be farther from the truth among

> > individuals who have experienced life-threatening kidney failure

> > following a severe episode of rhabdomyolysis (trigger-induced muscle

> > breakdown). "

> > Quote from: http://www.fodsupport.org/cpt2.htm

> >

> > Sometimes it takes time to find a doctor who understands. I had

> > symptoms for 19 years before I had a diagnosis. Most people don't

> > have to wait that long now because there is more awareness of these

> > disorders. I sure hope this happens sooner rather than later for

> > you!

> >

> > Take care,

> > Barbara

> >

> >

> >

> >

> >

> >

> >

> >

> > 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.

> >

> >

> >

> >

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Barbara, I remember talking once with a doctor who said that McArdle's is a

relativley bening condition and I said, well if you were in my body you

wouldn't say that! ha He quickly said yes, it sure wouldn't feel benign,

and I don't mean to make it sound like that.

So I guess when he said benign, which is the way MDA puts it too, he means

it won't neccesarily kill you, unless you get renal shut down of course,

which is always a threat.

Just the word benign botheres me though as it makes something that is so

life changing and horrilbe pain sound like it is " nothing to be concerned

about " To me it is an insult for it ever to be mentioned as that and think

it should be done away with in any literature that is labeled like that.

Smiles,

PubMed--benign CPK elevation

>

> Just to add that the label " benign " as applied to muscle disease is

> at least partly in the eye of the beholder. When I first went to the

> NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

> benign " disease and he repeated this on several occasions. Another

> CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

> disorder [CPT deficiency] has even been called " benign " in some

> scientific reports which could not be farther from the truth among

> individuals who have experienced life-threatening kidney failure

> following a severe episode of rhabdomyolysis (trigger-induced muscle

> breakdown). "

> Quote from: http://www.fodsupport.org/cpt2.htm

>

>> Take care,

> Barbara

>

>

>

>

>

>

>

>

>

> 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.

>

>

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Share on other sites

Boy, do I agree with this! Dr. D is the only doctor who has ever

said that to me and at the time I said nothing in return. But I wish

I had. Something like what you said. Walk a week in my shoes and

then see if you think this disease is benign!

Cheers!

Barbara

> Barbara, I remember talking once with a doctor who said that

McArdle's is a

> relativley bening condition and I said, well if you were in my

body you

> wouldn't say that! ha He quickly said yes, it sure wouldn't feel

benign,

> and I don't mean to make it sound like that.

> So I guess when he said benign, which is the way MDA puts it too,

he means

> it won't neccesarily kill you, unless you get renal shut down of

course,

> which is always a threat.

> Just the word benign botheres me though as it makes something that

is so

> life changing and horrilbe pain sound like it is " nothing to be

concerned

> about " To me it is an insult for it ever to be mentioned as that

and think

> it should be done away with in any literature that is labeled like

that.

>

> Smiles,

>

>

> PubMed--benign CPK elevation

>

>

> >

> > Just to add that the label " benign " as applied to muscle disease

is

> > at least partly in the eye of the beholder. When I first went to

the

> > NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

> > benign " disease and he repeated this on several occasions.

Another

> > CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

> > disorder [CPT deficiency] has even been called " benign " in some

> > scientific reports which could not be farther from the truth

among

> > individuals who have experienced life-threatening kidney failure

> > following a severe episode of rhabdomyolysis (trigger-induced

muscle

> > breakdown). "

> > Quote from: http://www.fodsupport.org/cpt2.htm

> >

> >> Take care,

> > Barbara

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > 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.

> >

> >

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you don't mean Dr D. at Columbia. do you???? If so, don't worry, I took

care of it for you!:))

Smiles,

PubMed--benign CPK elevation

> >

> >

> > >

> > > Just to add that the label " benign " as applied to muscle disease

> is

> > > at least partly in the eye of the beholder. When I first went to

> the

> > > NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

> > > benign " disease and he repeated this on several occasions.

> Another

> > > CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

> > > disorder [CPT deficiency] has even been called " benign " in some

> > > scientific reports which could not be farther from the truth

> among

> > > individuals who have experienced life-threatening kidney failure

> > > following a severe episode of rhabdomyolysis (trigger-induced

> muscle

> > > breakdown). "

> > > Quote from: http://www.fodsupport.org/cpt2.htm

> > >

> > >> Take care,

> > > Barbara

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > 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.

> > >

> > >

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First let me tell you all that my doctor didn't think that this " disorder will

NOT progress very badly. " Let me assure everyone that in the past three years I

have gotten worse than at any other time in my life.

I get cramps from my ankles to the middle of my back just standing and doing the

dishes. Whenever I stand at any length of time I have to sway back and forth

because if I don't I will be crying.

She also dismisses the other symptoms I have saying they are not related to

this. I have muscle twitching from minor to moderate. Once in awhile I will

get a twinge in my head and either my upper body will jerk or my whole body will

jerk.

I get slurred speech when I get tired (from not really doing anything). I come

close to blacking out on several occasions. My mind freezes up all the time.

But the reason she doesn't think that it is a mito disorder is that all my other

tests have come back normal except the elevated CK's.

My question is can this really be a MITO disorder or not?

Young jlyoung@...> wrote:

Barbara, I remember talking once with a doctor who said that McArdle's is a

relativley bening condition and I said, well if you were in my body you

wouldn't say that! ha He quickly said yes, it sure wouldn't feel benign,

and I don't mean to make it sound like that.

So I guess when he said benign, which is the way MDA puts it too, he means

it won't neccesarily kill you, unless you get renal shut down of course,

which is always a threat.

Just the word benign botheres me though as it makes something that is so

life changing and horrilbe pain sound like it is " nothing to be concerned

about " To me it is an insult for it ever to be mentioned as that and think

it should be done away with in any literature that is labeled like that.

Smiles,

PubMed--benign CPK elevation

>

> Just to add that the label " benign " as applied to muscle disease is

> at least partly in the eye of the beholder. When I first went to the

> NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

> benign " disease and he repeated this on several occasions. Another

> CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

> disorder [CPT deficiency] has even been called " benign " in some

> scientific reports which could not be farther from the truth among

> individuals who have experienced life-threatening kidney failure

> following a severe episode of rhabdomyolysis (trigger-induced muscle

> breakdown). "

> Quote from: http://www.fodsupport.org/cpt2.htm

>

>> Take care,

> Barbara

>

>

>

>

>

>

>

>

>

> 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.

>

>

Link to comment
Share on other sites

In my opinion, you could still have mito. My symptoms were similar to yours

about 15 or more years ago. They are somewhat controlled with meds,

supplements and use of adaptive equipment at this time.

My labs were all normal, including CK. It wasn't until I had a fresh muscle

biopsy that I finally got a diagnosis. Had I not done this, I probably would

still not have a diagnosis.

Good luck with your travels to a diagnosis. It took me 15 years, so I know

how frustrating it can be.

laurie

>

> Reply-To:

> Date: Sun, 17 Oct 2004 16:09:57 -0700 (PDT)

> To:

> Subject: Re: PubMed--benign CPK elevation

>

>

> First let me tell you all that my doctor didn't think that this " disorder will

> NOT progress very badly. " Let me assure everyone that in the past three years

> I have gotten worse than at any other time in my life.

>

> I get cramps from my ankles to the middle of my back just standing and doing

> the dishes. Whenever I stand at any length of time I have to sway back and

> forth because if I don't I will be crying.

>

> She also dismisses the other symptoms I have saying they are not related to

> this. I have muscle twitching from minor to moderate. Once in awhile I will

> get a twinge in my head and either my upper body will jerk or my whole body

> will jerk.

>

> I get slurred speech when I get tired (from not really doing anything). I

> come close to blacking out on several occasions. My mind freezes up all the

> time.

>

> But the reason she doesn't think that it is a mito disorder is that all my

> other tests have come back normal except the elevated CK's.

>

> My question is can this really be a MITO disorder or not?

>

>

> Young jlyoung@...> wrote:

> Barbara, I remember talking once with a doctor who said that McArdle's is a

> relativley bening condition and I said, well if you were in my body you

> wouldn't say that! ha He quickly said yes, it sure wouldn't feel benign,

> and I don't mean to make it sound like that.

> So I guess when he said benign, which is the way MDA puts it too, he means

> it won't neccesarily kill you, unless you get renal shut down of course,

> which is always a threat.

> Just the word benign botheres me though as it makes something that is so

> life changing and horrilbe pain sound like it is " nothing to be concerned

> about " To me it is an insult for it ever to be mentioned as that and think

> it should be done away with in any literature that is labeled like that.

>

> Smiles,

>

>

> PubMed--benign CPK elevation

>

>

>>

>> Just to add that the label " benign " as applied to muscle disease is

>> at least partly in the eye of the beholder. When I first went to the

>> NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

>> benign " disease and he repeated this on several occasions. Another

>> CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

>> disorder [CPT deficiency] has even been called " benign " in some

>> scientific reports which could not be farther from the truth among

>> individuals who have experienced life-threatening kidney failure

>> following a severe episode of rhabdomyolysis (trigger-induced muscle

>> breakdown). "

>> Quote from: http://www.fodsupport.org/cpt2.htm

>>

>>> Take care,

>> Barbara

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> 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.

>>

>>

Link to comment
Share on other sites

In my opinion, you could still have mito. My symptoms were similar to yours

about 15 or more years ago. They are somewhat controlled with meds,

supplements and use of adaptive equipment at this time.

My labs were all normal, including CK. It wasn't until I had a fresh muscle

biopsy that I finally got a diagnosis. Had I not done this, I probably would

still not have a diagnosis.

Good luck with your travels to a diagnosis. It took me 15 years, so I know

how frustrating it can be.

laurie

>

> Reply-To:

> Date: Sun, 17 Oct 2004 16:09:57 -0700 (PDT)

> To:

> Subject: Re: PubMed--benign CPK elevation

>

>

> First let me tell you all that my doctor didn't think that this " disorder will

> NOT progress very badly. " Let me assure everyone that in the past three years

> I have gotten worse than at any other time in my life.

>

> I get cramps from my ankles to the middle of my back just standing and doing

> the dishes. Whenever I stand at any length of time I have to sway back and

> forth because if I don't I will be crying.

>

> She also dismisses the other symptoms I have saying they are not related to

> this. I have muscle twitching from minor to moderate. Once in awhile I will

> get a twinge in my head and either my upper body will jerk or my whole body

> will jerk.

>

> I get slurred speech when I get tired (from not really doing anything). I

> come close to blacking out on several occasions. My mind freezes up all the

> time.

>

> But the reason she doesn't think that it is a mito disorder is that all my

> other tests have come back normal except the elevated CK's.

>

> My question is can this really be a MITO disorder or not?

>

>

> Young jlyoung@...> wrote:

> Barbara, I remember talking once with a doctor who said that McArdle's is a

> relativley bening condition and I said, well if you were in my body you

> wouldn't say that! ha He quickly said yes, it sure wouldn't feel benign,

> and I don't mean to make it sound like that.

> So I guess when he said benign, which is the way MDA puts it too, he means

> it won't neccesarily kill you, unless you get renal shut down of course,

> which is always a threat.

> Just the word benign botheres me though as it makes something that is so

> life changing and horrilbe pain sound like it is " nothing to be concerned

> about " To me it is an insult for it ever to be mentioned as that and think

> it should be done away with in any literature that is labeled like that.

>

> Smiles,

>

>

> PubMed--benign CPK elevation

>

>

>>

>> Just to add that the label " benign " as applied to muscle disease is

>> at least partly in the eye of the beholder. When I first went to the

>> NIH in 1985, Dr. Dalakas told me that CPT deficiency is a " very

>> benign " disease and he repeated this on several occasions. Another

>> CPT researcher, Dr. Vladutiu, strongly disagrees. She says: " The

>> disorder [CPT deficiency] has even been called " benign " in some

>> scientific reports which could not be farther from the truth among

>> individuals who have experienced life-threatening kidney failure

>> following a severe episode of rhabdomyolysis (trigger-induced muscle

>> breakdown). "

>> Quote from: http://www.fodsupport.org/cpt2.htm

>>

>>> Take care,

>> Barbara

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> 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.

>>

>>

Link to comment
Share on other sites

> But the reason she doesn't think that it is a mito disorder is

that all my other tests have come back normal except the elevated

CK's.

>

> My question is can this really be a MITO disorder or not?

>

>

Depends on what tests were run. On a lot of muscle biopsies, they

run only standard tests and don't do the specific measurements of

the enzymes in the mito complexes to see if those are deficient.

There are only a few labs in the country that can reliably measure

the necessary enzymes to diagnose mito.

Good luck,

Barbara

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