Re: question about oxygen/muscle weakness

November 4, 2004

barb, are you thinking of hyperbaric therapy?

markb

from a little below half way down the page.

(05/04) [4029] HYPERBARIC OXYGEN TREATMENT

My friend's granddaughter has finally been diagnosed

with Leigh's syndrome (LS). Are you aware of a

treatment utilizing hyperbaric chambers to treat this

girl's symptoms? If so, is it effective and how does it

work? We understand that the only place to receive the

treatment is in south Florida. If this type of

treatment works, is it possible that the child has been

misdiagnosed?

REPLY from MDA: Salvatore DiMauro, M.D., Columbia

University College of Physicians & Surgeons, New York,

N.Y.

I have no direct experience with hyperbaric oxygen

therapy, which is not used routinely in mitochondrial

diseases. The rationale behind hyperbaric therapy must

be to " force " more oxygen into the tissues, thus also

" forcing " oxygen upon abnormal mitochondria, which are

unable to pick up oxygen adequately from the blood. I

am very skeptical about this simplistic reasoning, and

I would be particularly reluctant to expose an infant

or a child to this treatment, which, as far as I know,

has not been formally tested and has a weak rationale.

http://www.mdausa.org/experts/viewall.cfm?id=94

--- wheatchild2 wheatchild@...> wrote:

>

> I am vaguely remembering a discussion many months ago

> about oxygen

> therapy for people with muscle weakness of the chest.

> Is there any

> controversy among experts about the use of oxygen for

> elevated Co2

> due to muscle weakness? Are there any particular

> cautions or

> contraindications? Seems like I read some posts about

> differing

> opinions on treatment where muscle weakness is the

> cause of low

> oxygen?

>

> Any help appreciated.

> Barbara

>

=====

Three things are certain:

Death, Taxes and Lost Data.

Guess which has occurred.

__________________________________________________

November 4, 2004

barb, are you thinking of hyperbaric therapy?

markb

from a little below half way down the page.

(05/04) [4029] HYPERBARIC OXYGEN TREATMENT

My friend's granddaughter has finally been diagnosed

with Leigh's syndrome (LS). Are you aware of a

treatment utilizing hyperbaric chambers to treat this

girl's symptoms? If so, is it effective and how does it

work? We understand that the only place to receive the

treatment is in south Florida. If this type of

treatment works, is it possible that the child has been

misdiagnosed?

REPLY from MDA: Salvatore DiMauro, M.D., Columbia

University College of Physicians & Surgeons, New York,

N.Y.

I have no direct experience with hyperbaric oxygen

therapy, which is not used routinely in mitochondrial

diseases. The rationale behind hyperbaric therapy must

be to " force " more oxygen into the tissues, thus also

" forcing " oxygen upon abnormal mitochondria, which are

unable to pick up oxygen adequately from the blood. I

am very skeptical about this simplistic reasoning, and

I would be particularly reluctant to expose an infant

or a child to this treatment, which, as far as I know,

has not been formally tested and has a weak rationale.

http://www.mdausa.org/experts/viewall.cfm?id=94

--- wheatchild2 wheatchild@...> wrote:

>

> I am vaguely remembering a discussion many months ago

> about oxygen

> therapy for people with muscle weakness of the chest.

> Is there any

> controversy among experts about the use of oxygen for

> elevated Co2

> due to muscle weakness? Are there any particular

> cautions or

> contraindications? Seems like I read some posts about

> differing

> opinions on treatment where muscle weakness is the

> cause of low

> oxygen?

>

> Any help appreciated.

> Barbara

>

=====

Three things are certain:

Death, Taxes and Lost Data.

Guess which has occurred.

__________________________________________________

November 4, 2004

No, not hyperbaric. My neurologist has scheduled a sleep study for

various complicated reasons. May need cpap or bipap. Co2 elevated,

seizures etc. We're also trying to find out why sleep triggers major

neurological events.

B

>

> >

> > I am vaguely remembering a discussion many months ago

> > about oxygen

> > therapy for people with muscle weakness of the chest.

> > Is there any

> > controversy among experts about the use of oxygen for

> > elevated Co2

> > due to muscle weakness? Are there any particular

> > cautions or

> > contraindications? Seems like I read some posts about

> > differing

> > opinions on treatment where muscle weakness is the

> > cause of low

> > oxygen?

> >

> > Any help appreciated.

> > Barbara

> >

>

> =====

> Three things are certain:

> Death, Taxes and Lost Data.

> Guess which has occurred.

>

> __________________________________________________

>

November 4, 2004

Barbara

I put an article on the web site that is about use of oxygen with muscle

weakness. I also talked with my MDA neuro about it. He was glad I had gotten

off the O2 at night. Some people can't get along without it, but it does

produce free radicals and futher muscle weakness.

laurie

>

> Reply-To:

> Date: Thu, 04 Nov 2004 20:59:04 -0000

> To:

> Subject: question about oxygen/muscle weakness

>

> I am vaguely remembering a discussion many months ago about oxygen

> therapy for people with muscle weakness of the chest. Is there any

> controversy among experts about the use of oxygen for elevated Co2

> due to muscle weakness? Are there any particular cautions or

> contraindications? Seems like I read some posts about differing

> opinions on treatment where muscle weakness is the cause of low

> oxygen?

>

> Any help appreciated.

> 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.

>

November 4, 2004

Barbara

I put an article on the web site that is about use of oxygen with muscle

weakness. I also talked with my MDA neuro about it. He was glad I had gotten

off the O2 at night. Some people can't get along without it, but it does

produce free radicals and futher muscle weakness.

laurie

>

> Reply-To:

> Date: Thu, 04 Nov 2004 20:59:04 -0000

> To:

> Subject: question about oxygen/muscle weakness

>

> I am vaguely remembering a discussion many months ago about oxygen

> therapy for people with muscle weakness of the chest. Is there any

> controversy among experts about the use of oxygen for elevated Co2

> due to muscle weakness? Are there any particular cautions or

> contraindications? Seems like I read some posts about differing

> opinions on treatment where muscle weakness is the cause of low

> oxygen?

>

> Any help appreciated.

> 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.

>

November 4, 2004

Laurie,

I can't find the article. Can you tell me the file name (assuming

that you mean it is listed on the UMDF website under files)?

Thanks.

Maggie

> Barbara

>

> I put an article on the web site that is about use of oxygen with

muscle

> weakness. I also talked with my MDA neuro about it. He was glad I

had gotten

> off the O2 at night. Some people can't get along without it, but

it does

> produce free radicals and futher muscle weakness.

>

> laurie

>

> > From: " wheatchild2 "

> > Reply-To:

> > Date: Thu, 04 Nov 2004 20:59:04 -0000

> > To:

> > Subject: question about oxygen/muscle weakness

> >

> > I am vaguely remembering a discussion many months ago about

oxygen

> > therapy for people with muscle weakness of the chest. Is there

any

> > controversy among experts about the use of oxygen for elevated

Co2

> > due to muscle weakness? Are there any particular cautions or

> > contraindications? Seems like I read some posts about differing

> > opinions on treatment where muscle weakness is the cause of low

> > oxygen?

> >

> > Any help appreciated.

> > 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.

> >

November 4, 2004

Laurie,

I can't find the article. Can you tell me the file name (assuming

that you mean it is listed on the UMDF website under files)?

Thanks.

Maggie

> Barbara

>

> I put an article on the web site that is about use of oxygen with

muscle

> weakness. I also talked with my MDA neuro about it. He was glad I

had gotten

> off the O2 at night. Some people can't get along without it, but

it does

> produce free radicals and futher muscle weakness.

>

> laurie

>

> > From: " wheatchild2 "

> > Reply-To:

> > Date: Thu, 04 Nov 2004 20:59:04 -0000

> > To:

> > Subject: question about oxygen/muscle weakness

> >

> > I am vaguely remembering a discussion many months ago about

oxygen

> > therapy for people with muscle weakness of the chest. Is there

any

> > controversy among experts about the use of oxygen for elevated

Co2

> > due to muscle weakness? Are there any particular cautions or

> > contraindications? Seems like I read some posts about differing

> > opinions on treatment where muscle weakness is the cause of low

> > oxygen?

> >

> > Any help appreciated.

> > 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.

> >

November 5, 2004

Maggie

It is an MDA " Quest " article and I can't remember the title. It is on the

web site. If you can't find it there, let me know and I think I

have it scanned and could send it to you privately. You can also look on the

MDA site. I think the article is about 1-1.5 years back.

laurie

>

> Reply-To:

> Date: Fri, 05 Nov 2004 04:08:32 -0000

> To:

> Subject: Re: question about oxygen/muscle weakness

>

> Laurie,

> I can't find the article. Can you tell me the file name (assuming

> that you mean it is listed on the UMDF website under files)?

> Thanks.

> Maggie

>

>> Barbara

>>

>> I put an article on the web site that is about use of oxygen with

> muscle

>> weakness. I also talked with my MDA neuro about it. He was glad I

> had gotten

>> off the O2 at night. Some people can't get along without it, but

> it does

>> produce free radicals and futher muscle weakness.

>>

>> laurie

>>

>>> From: " wheatchild2 "

>>> Reply-To:

>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

>>> To:

>>> Subject: question about oxygen/muscle weakness

>>>

>>> I am vaguely remembering a discussion many months ago about

> oxygen

>>> therapy for people with muscle weakness of the chest. Is there

> any

>>> controversy among experts about the use of oxygen for elevated

> Co2

>>> due to muscle weakness? Are there any particular cautions or

>>> contraindications? Seems like I read some posts about differing

>>> opinions on treatment where muscle weakness is the cause of low

>>> oxygen?

>>>

>>> Any help appreciated.

>>> 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.

>>>

November 5, 2004

Ah, ha! This was what I was remembering, just couldn't recall the

details. My mind is not completely gone yet! Okay, so let me see if

I understand this. BiPAP is assisted ventilation but without adding

oxygen. Is this correct? I didn't find the article in the Mitoldies

file but did find something on MDA with a quick search.

http://www.mdausa.org/experts/question.cfm?id=1150

Anyway, thks Laurie, this relieves my mind.

Barbara

> Barbara

>

> I put an article on the web site that is about use of oxygen with

muscle

> weakness. I also talked with my MDA neuro about it. He was glad I

had gotten

> off the O2 at night. Some people can't get along without it, but

it does

> produce free radicals and futher muscle weakness.

>

> laurie

>

> > From: " wheatchild2 "

> > Reply-To:

> > Date: Thu, 04 Nov 2004 20:59:04 -0000

> > To:

> > Subject: question about oxygen/muscle weakness

> >

> > I am vaguely remembering a discussion many months ago about

oxygen

> > therapy for people with muscle weakness of the chest. Is there

any

> > controversy among experts about the use of oxygen for elevated

Co2

> > due to muscle weakness? Are there any particular cautions or

> > contraindications? Seems like I read some posts about differing

> > opinions on treatment where muscle weakness is the cause of low

> > oxygen?

> >

> > Any help appreciated.

> > 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.

> >

November 5, 2004

Barbara

Oxygen can be used with either biPAP, CPAP or without either. I now have a

machine that can be switched from a CPAP to a biPAP which assists with both

inhalation and expiration. My MDA neuro agrees with this info and says that

he would have me on 24 hour biPAP before going to O2. Just one opinion.

laurie

>

> Reply-To:

> Date: Fri, 05 Nov 2004 14:19:20 -0000

> To:

> Subject: Re: question about oxygen/muscle weakness

>

> Ah, ha! This was what I was remembering, just couldn't recall the

> details. My mind is not completely gone yet! Okay, so let me see if

> I understand this. BiPAP is assisted ventilation but without adding

> oxygen. Is this correct? I didn't find the article in the Mitoldies

> file but did find something on MDA with a quick search.

>

> http://www.mdausa.org/experts/question.cfm?id=1150

>

> Anyway, thks Laurie, this relieves my mind.

> Barbara

>

>> Barbara

>>

>> I put an article on the web site that is about use of oxygen with

> muscle

>> weakness. I also talked with my MDA neuro about it. He was glad I

> had gotten

>> off the O2 at night. Some people can't get along without it, but

> it does

>> produce free radicals and futher muscle weakness.

>>

>> laurie

>>

>>> From: " wheatchild2 "

>>> Reply-To:

>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

>>> To:

>>> Subject: question about oxygen/muscle weakness

>>>

>>> I am vaguely remembering a discussion many months ago about

> oxygen

>>> therapy for people with muscle weakness of the chest. Is there

> any

>>> controversy among experts about the use of oxygen for elevated

> Co2

>>> due to muscle weakness? Are there any particular cautions or

>>> contraindications? Seems like I read some posts about differing

>>> opinions on treatment where muscle weakness is the cause of low

>>> oxygen?

>>>

>>> Any help appreciated.

>>> 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.

>>>

November 5, 2004

Barbara

Oxygen can be used with either biPAP, CPAP or without either. I now have a

machine that can be switched from a CPAP to a biPAP which assists with both

inhalation and expiration. My MDA neuro agrees with this info and says that

he would have me on 24 hour biPAP before going to O2. Just one opinion.

laurie

>

> Reply-To:

> Date: Fri, 05 Nov 2004 14:19:20 -0000

> To:

> Subject: Re: question about oxygen/muscle weakness

>

> Ah, ha! This was what I was remembering, just couldn't recall the

> details. My mind is not completely gone yet! Okay, so let me see if

> I understand this. BiPAP is assisted ventilation but without adding

> oxygen. Is this correct? I didn't find the article in the Mitoldies

> file but did find something on MDA with a quick search.

>

> http://www.mdausa.org/experts/question.cfm?id=1150

>

> Anyway, thks Laurie, this relieves my mind.

> Barbara

>

>> Barbara

>>

>> I put an article on the web site that is about use of oxygen with

> muscle

>> weakness. I also talked with my MDA neuro about it. He was glad I

> had gotten

>> off the O2 at night. Some people can't get along without it, but

> it does

>> produce free radicals and futher muscle weakness.

>>

>> laurie

>>

>>> From: " wheatchild2 "

>>> Reply-To:

>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

>>> To:

>>> Subject: question about oxygen/muscle weakness

>>>

>>> I am vaguely remembering a discussion many months ago about

> oxygen

>>> therapy for people with muscle weakness of the chest. Is there

> any

>>> controversy among experts about the use of oxygen for elevated

> Co2

>>> due to muscle weakness? Are there any particular cautions or

>>> contraindications? Seems like I read some posts about differing

>>> opinions on treatment where muscle weakness is the cause of low

>>> oxygen?

>>>

>>> Any help appreciated.

>>> 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.

>>>

November 5, 2004

Okay, the oxygen part makes sense, but now I'm slightly confused on

the inhale/exhale part. The MDA link I found mentioned a biPAP

machine with two settings, one for inhaling and one for exhaling.

But they labeled the settings IPAP and EPAP. So where does CPAP fit

in this scheme of things? I've pasted the MDA excerpt below. Does

their description sound like your old machine or your new machine?

As always, appreciate your help.

Barbara

Question #3 - What are the two BiPAP settings?

Answer - " IPAP " and " EPAP " - The " IPAP " is inspiratory airway

pressure. This pressure assists airflow into the lungs with each

breath. It assists breathing and allows the respiratory muscles rest

so that a person often can function more strongly later in the day.

This is usually used at night when lying down makes breathing more

difficult. Then during the daytime, while sitting up or standing,

breathing is easier and the rested muscles are often able to

function with more strength. The " EPAP " is the expiratory airway

pressure that clears expired air with CO2 out of the ventilator

tubing (circuits). The " EPAP " is usually set as low as possible, and

the " IPAP " is set high enough to get good lung expansion, to be

comfortable, and to achieve an oxygen saturation of at least 95%.

> >> Barbara

> >>

> >> I put an article on the web site that is about use of oxygen

with

> > muscle

> >> weakness. I also talked with my MDA neuro about it. He was glad

I

> > had gotten

> >> off the O2 at night. Some people can't get along without it, but

> > it does

> >> produce free radicals and futher muscle weakness.

> >>

> >> laurie

> >>

> >>> From: " wheatchild2 "

> >>> Reply-To:

> >>> Date: Thu, 04 Nov 2004 20:59:04 -0000

> >>> To:

> >>> Subject: question about oxygen/muscle weakness

> >>>

> >>> I am vaguely remembering a discussion many months ago about

> > oxygen

> >>> therapy for people with muscle weakness of the chest. Is there

> > any

> >>> controversy among experts about the use of oxygen for elevated

> > Co2

> >>> due to muscle weakness? Are there any particular cautions or

> >>> contraindications? Seems like I read some posts about differing

> >>> opinions on treatment where muscle weakness is the cause of low

> >>> oxygen?

> >>>

> >>> Any help appreciated.

> >>> 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.

> >>>

November 5, 2004

Barbara

The CPAP has only one setting. It is a steady pressure. This is what I use

at night. I don't have any problem with exhalation, so it just keeps my

airway open and tends to help me breath a bit faster than 2-3 times per

minute without it. Their description is like my new machine, but it is not

on that setting. It is configured as a CPAP. The article also mentions that

if buying one, get the type I have that can be changed over when and if

needed.

Which ever one is needed, consider the need for a humidifier. I can't use

one without. My old machine had a water compartment and the air flowed over

it, picking up moisture. My new one is also a pass-over humidifier but the

water can be heated to different temperatures so more moisture is picked. I

have also used the bubbler type. The air goes through the water (like in a

fish tank). I'm getting about 9 ounces of moisture during the 8 hours I am

sleeping, but it runs out if I sleep longer.

laurie

>

> Reply-To:

> Date: Fri, 05 Nov 2004 21:35:38 -0000

> To:

> Subject: Re: question about oxygen/muscle weakness

>

> Okay, the oxygen part makes sense, but now I'm slightly confused on

> the inhale/exhale part. The MDA link I found mentioned a biPAP

> machine with two settings, one for inhaling and one for exhaling.

> But they labeled the settings IPAP and EPAP. So where does CPAP fit

> in this scheme of things? I've pasted the MDA excerpt below. Does

> their description sound like your old machine or your new machine?

>

> As always, appreciate your help.

> Barbara

>

> Question #3 - What are the two BiPAP settings?

>

> Answer - " IPAP " and " EPAP " - The " IPAP " is inspiratory airway

> pressure. This pressure assists airflow into the lungs with each

> breath. It assists breathing and allows the respiratory muscles rest

> so that a person often can function more strongly later in the day.

> This is usually used at night when lying down makes breathing more

> difficult. Then during the daytime, while sitting up or standing,

> breathing is easier and the rested muscles are often able to

> function with more strength. The " EPAP " is the expiratory airway

> pressure that clears expired air with CO2 out of the ventilator

> tubing (circuits). The " EPAP " is usually set as low as possible, and

> the " IPAP " is set high enough to get good lung expansion, to be

> comfortable, and to achieve an oxygen saturation of at least 95%.

>

>>>> Barbara

>>>>

>>>> I put an article on the web site that is about use of oxygen

> with

>>> muscle

>>>> weakness. I also talked with my MDA neuro about it. He was glad

> I

>>> had gotten

>>>> off the O2 at night. Some people can't get along without it, but

>>> it does

>>>> produce free radicals and futher muscle weakness.

>>>>

>>>> laurie

>>>>

>>>>> From: " wheatchild2 "

>>>>> Reply-To:

>>>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

>>>>> To:

>>>>> Subject: question about oxygen/muscle weakness

>>>>>

>>>>> I am vaguely remembering a discussion many months ago about

>>> oxygen

>>>>> therapy for people with muscle weakness of the chest. Is there

>>> any

>>>>> controversy among experts about the use of oxygen for elevated

>>> Co2

>>>>> due to muscle weakness? Are there any particular cautions or

>>>>> contraindications? Seems like I read some posts about differing

>>>>> opinions on treatment where muscle weakness is the cause of low

>>>>> oxygen?

>>>>>

>>>>> Any help appreciated.

>>>>> 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.

>>>>>

November 5, 2004

Great info, tks! Also appreciate the tip on the humidifier. My

husband is laughing, thinking about all the tubes and cords I'll be

sleeping with at night. Hard enough to keep the j-tube untangled and

beep-free. Well, one way or another, we'll figure it out.

B

> >>>> Barbara

> >>>>

> >>>> I put an article on the web site that is about use of oxygen

> > with

> >>> muscle

> >>>> weakness. I also talked with my MDA neuro about it. He was

glad

> > I

> >>> had gotten

> >>>> off the O2 at night. Some people can't get along without it,

but

> >>> it does

> >>>> produce free radicals and futher muscle weakness.

> >>>>

> >>>> laurie

> >>>>

> >>>>> From: " wheatchild2 "

> >>>>> Reply-To:

> >>>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

> >>>>> To:

> >>>>> Subject: question about oxygen/muscle weakness

> >>>>>

> >>>>> I am vaguely remembering a discussion many months ago about

> >>> oxygen

> >>>>> therapy for people with muscle weakness of the chest. Is

there

> >>> any

> >>>>> controversy among experts about the use of oxygen for

elevated

> >>> Co2

> >>>>> due to muscle weakness? Are there any particular cautions or

> >>>>> contraindications? Seems like I read some posts about

differing

> >>>>> opinions on treatment where muscle weakness is the cause of

low

> >>>>> oxygen?

> >>>>>

> >>>>> Any help appreciated.

> >>>>> 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.

> >>>>>

November 5, 2004

Great info, tks! Also appreciate the tip on the humidifier. My

husband is laughing, thinking about all the tubes and cords I'll be

sleeping with at night. Hard enough to keep the j-tube untangled and

beep-free. Well, one way or another, we'll figure it out.

B

> >>>> Barbara

> >>>>

> >>>> I put an article on the web site that is about use of oxygen

> > with

> >>> muscle

> >>>> weakness. I also talked with my MDA neuro about it. He was

glad

> > I

> >>> had gotten

> >>>> off the O2 at night. Some people can't get along without it,

but

> >>> it does

> >>>> produce free radicals and futher muscle weakness.

> >>>>

> >>>> laurie

> >>>>

> >>>>> From: " wheatchild2 "

> >>>>> Reply-To:

> >>>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

> >>>>> To:

> >>>>> Subject: question about oxygen/muscle weakness

> >>>>>

> >>>>> I am vaguely remembering a discussion many months ago about

> >>> oxygen

> >>>>> therapy for people with muscle weakness of the chest. Is

there

> >>> any

> >>>>> controversy among experts about the use of oxygen for

elevated

> >>> Co2

> >>>>> due to muscle weakness? Are there any particular cautions or

> >>>>> contraindications? Seems like I read some posts about

differing

> >>>>> opinions on treatment where muscle weakness is the cause of

low

> >>>>> oxygen?

> >>>>>

> >>>>> Any help appreciated.

> >>>>> 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.

> >>>>>

November 5, 2004

Barbara

My mask is such that I can put the tube going up or any position. I don't

have a head board, so my tubing runs across the top of the bed which keeps

it from getting tangled in my arms. It works for me. The only problem I have

is getting the mask off and side rail down in order to get out of bed when I

get cramps in my legs and feet. Gone are the days of just jumping up.

I hope you find something to help. I agree with Alice and just don't sleep

when I don't have mine on.

laurie

>

> Reply-To:

> Date: Fri, 05 Nov 2004 22:24:47 -0000

> To:

> Subject: Re: question about oxygen/muscle weakness

>

> Great info, tks! Also appreciate the tip on the humidifier. My

> husband is laughing, thinking about all the tubes and cords I'll be

> sleeping with at night. Hard enough to keep the j-tube untangled and

> beep-free. Well, one way or another, we'll figure it out.

>

> B

>

>>>>>> Barbara

>>>>>>

>>>>>> I put an article on the web site that is about use of oxygen

>>> with

>>>>> muscle

>>>>>> weakness. I also talked with my MDA neuro about it. He was

> glad

>>> I

>>>>> had gotten

>>>>>> off the O2 at night. Some people can't get along without it,

> but

>>>>> it does

>>>>>> produce free radicals and futher muscle weakness.

>>>>>>

>>>>>> laurie

>>>>>>

>>>>>>> From: " wheatchild2 "

>>>>>>> Reply-To:

>>>>>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

>>>>>>> To:

>>>>>>> Subject: question about oxygen/muscle weakness

>>>>>>>

>>>>>>> I am vaguely remembering a discussion many months ago about

>>>>> oxygen

>>>>>>> therapy for people with muscle weakness of the chest. Is

> there

>>>>> any

>>>>>>> controversy among experts about the use of oxygen for

> elevated

>>>>> Co2

>>>>>>> due to muscle weakness? Are there any particular cautions or

>>>>>>> contraindications? Seems like I read some posts about

> differing

>>>>>>> opinions on treatment where muscle weakness is the cause of

> low

>>>>>>> oxygen?

>>>>>>>

>>>>>>> Any help appreciated.

>>>>>>> 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.

>>>>>>>

November 5, 2004

Barbara

My mask is such that I can put the tube going up or any position. I don't

have a head board, so my tubing runs across the top of the bed which keeps

it from getting tangled in my arms. It works for me. The only problem I have

is getting the mask off and side rail down in order to get out of bed when I

get cramps in my legs and feet. Gone are the days of just jumping up.

I hope you find something to help. I agree with Alice and just don't sleep

when I don't have mine on.

laurie

>

> Reply-To:

> Date: Fri, 05 Nov 2004 22:24:47 -0000

> To:

> Subject: Re: question about oxygen/muscle weakness

>

> Great info, tks! Also appreciate the tip on the humidifier. My

> husband is laughing, thinking about all the tubes and cords I'll be

> sleeping with at night. Hard enough to keep the j-tube untangled and

> beep-free. Well, one way or another, we'll figure it out.

>

> B

>

>>>>>> Barbara

>>>>>>

>>>>>> I put an article on the web site that is about use of oxygen

>>> with

>>>>> muscle

>>>>>> weakness. I also talked with my MDA neuro about it. He was

> glad

>>> I

>>>>> had gotten

>>>>>> off the O2 at night. Some people can't get along without it,

> but

>>>>> it does

>>>>>> produce free radicals and futher muscle weakness.

>>>>>>

>>>>>> laurie

>>>>>>

>>>>>>> From: " wheatchild2 "

>>>>>>> Reply-To:

>>>>>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

>>>>>>> To:

>>>>>>> Subject: question about oxygen/muscle weakness

>>>>>>>

>>>>>>> I am vaguely remembering a discussion many months ago about

>>>>> oxygen

>>>>>>> therapy for people with muscle weakness of the chest. Is

> there

>>>>> any

>>>>>>> controversy among experts about the use of oxygen for

> elevated

>>>>> Co2

>>>>>>> due to muscle weakness? Are there any particular cautions or

>>>>>>> contraindications? Seems like I read some posts about

> differing

>>>>>>> opinions on treatment where muscle weakness is the cause of

> low

>>>>>>> oxygen?

>>>>>>>

>>>>>>> Any help appreciated.

>>>>>>> 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.

>>>>>>>

November 5, 2004

Good idea. Maybe we can work something like that to keep the tubes

separate. I do have to get up a lot at night, usually 3-4 times, and

sometimes get the tube wrapped around me like tinsel on a Christmas

tree. Life sure is interesting.

B

> >>>>>> Barbara

> >>>>>>

> >>>>>> I put an article on the web site that is about use of oxygen

> >>> with

> >>>>> muscle

> >>>>>> weakness. I also talked with my MDA neuro about it. He was

> > glad

> >>> I

> >>>>> had gotten

> >>>>>> off the O2 at night. Some people can't get along without it,

> > but

> >>>>> it does

> >>>>>> produce free radicals and futher muscle weakness.

> >>>>>>

> >>>>>> laurie

> >>>>>>

> >>>>>>> From: " wheatchild2 "

> >>>>>>> Reply-To:

> >>>>>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

> >>>>>>> To:

> >>>>>>> Subject: question about oxygen/muscle weakness

> >>>>>>>

> >>>>>>> I am vaguely remembering a discussion many months ago about

> >>>>> oxygen

> >>>>>>> therapy for people with muscle weakness of the chest. Is

> > there

> >>>>> any

> >>>>>>> controversy among experts about the use of oxygen for

> > elevated

> >>>>> Co2

> >>>>>>> due to muscle weakness? Are there any particular cautions

or

> >>>>>>> contraindications? Seems like I read some posts about

> > differing

> >>>>>>> opinions on treatment where muscle weakness is the cause of

> > low

> >>>>>>> oxygen?

> >>>>>>>

> >>>>>>> Any help appreciated.

> >>>>>>> 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.

> >>>>>>>

November 5, 2004

Good idea. Maybe we can work something like that to keep the tubes

separate. I do have to get up a lot at night, usually 3-4 times, and

sometimes get the tube wrapped around me like tinsel on a Christmas

tree. Life sure is interesting.

B

> >>>>>> Barbara

> >>>>>>

> >>>>>> I put an article on the web site that is about use of oxygen

> >>> with

> >>>>> muscle

> >>>>>> weakness. I also talked with my MDA neuro about it. He was

> > glad

> >>> I

> >>>>> had gotten

> >>>>>> off the O2 at night. Some people can't get along without it,

> > but

> >>>>> it does

> >>>>>> produce free radicals and futher muscle weakness.

> >>>>>>

> >>>>>> laurie

> >>>>>>

> >>>>>>> From: " wheatchild2 "

> >>>>>>> Reply-To:

> >>>>>>> Date: Thu, 04 Nov 2004 20:59:04 -0000

> >>>>>>> To:

> >>>>>>> Subject: question about oxygen/muscle weakness

> >>>>>>>

> >>>>>>> I am vaguely remembering a discussion many months ago about

> >>>>> oxygen

> >>>>>>> therapy for people with muscle weakness of the chest. Is

> > there

> >>>>> any

> >>>>>>> controversy among experts about the use of oxygen for

> > elevated

> >>>>> Co2

> >>>>>>> due to muscle weakness? Are there any particular cautions

or

> >>>>>>> contraindications? Seems like I read some posts about

> > differing

> >>>>>>> opinions on treatment where muscle weakness is the cause of

> > low

> >>>>>>> oxygen?

> >>>>>>>

> >>>>>>> Any help appreciated.

> >>>>>>> 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.

> >>>>>>>

November 5, 2004

Barbara,

Your post made me Laugh so hard.!!! The only thing I could think of as I read it

was " Oh my Gosh.....what if you have to go to the bathroom really really bad? "

LOL

I would be dancing the jig trying to get unwrapped from the tubes and all. :-)

Have a good day

Hugs,

Ann-Marie

question about oxygen/muscle weakness

> >>>>>>>

> >>>>>>> I am vaguely remembering a discussion many months ago about

> >>>>> oxygen

> >>>>>>> therapy for people with muscle weakness of the chest. Is

> > there

> >>>>> any

> >>>>>>> controversy among experts about the use of oxygen for

> > elevated

> >>>>> Co2

> >>>>>>> due to muscle weakness? Are there any particular cautions

or

> >>>>>>> contraindications? Seems like I read some posts about

> > differing

> >>>>>>> opinions on treatment where muscle weakness is the cause of

> > low

> >>>>>>> oxygen?

> >>>>>>>

> >>>>>>> Any help appreciated.

> >>>>>>> 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.

> >>>>>>>

November 5, 2004

Barbara,

Your post made me Laugh so hard.!!! The only thing I could think of as I read it

was " Oh my Gosh.....what if you have to go to the bathroom really really bad? "

LOL

I would be dancing the jig trying to get unwrapped from the tubes and all. :-)

Have a good day

Hugs,

Ann-Marie

question about oxygen/muscle weakness

> >>>>>>>

> >>>>>>> I am vaguely remembering a discussion many months ago about

> >>>>> oxygen

> >>>>>>> therapy for people with muscle weakness of the chest. Is

> > there

> >>>>> any

> >>>>>>> controversy among experts about the use of oxygen for

> > elevated

> >>>>> Co2

> >>>>>>> due to muscle weakness? Are there any particular cautions

or

> >>>>>>> contraindications? Seems like I read some posts about

> > differing

> >>>>>>> opinions on treatment where muscle weakness is the cause of

> > low

> >>>>>>> oxygen?

> >>>>>>>

> >>>>>>> Any help appreciated.

> >>>>>>> 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.

> >>>>>>>

November 6, 2004

Barbara,

I am actually using a V-Pap now which is a step up from a Bi-Pap, but let me

see if I can explain some of the terms to you.

The IPAP is your inspriatory pressure. How much the machine is pushing air

in your lungs measured in cm H2O. The EPAP is your expiratory pressure or

how much the machine is working as your exhale (again measured in cm H2O).

The difference between the two is your ventilatory pressure. Whether you

have a CPAP or BiPAP you will have IPAP and EPAP settings. They will tend

to be further apart on Bi-Pap. With CPAP your IPAP and EPAP will

essentially be the same because it is a continuous flow.

One other thing to think about is the mask. If you are having to get up

that often at night you might want to make sure the mask you get has quick

clips on it. I'm using an Ultra Mirage by Res Med. I like how they

designed this.

Hope this makes some sense.

P.S. I'm also tubular at night with the V-Pap, O2 and J tube...it gets

interesting some nights for sure )

Kristie

Message: 11

Date: Fri, 05 Nov 2004 21:35:38 -0000

Subject: Re: question about oxygen/muscle weakness