Respiratory muscle weakness

[Guest guest]

I was just wondering how many of you have respiratory muscle weakness

and what,if any, treatment you are doing. I have respiratory muscle

weakness verified by my pft's. I am going to be seeing a new

pulmonologist at UNC since my other pulmonologist moved away. I have

to have my pft's repeated prior to seeing him . I hope they include

the mip,mep, and the mvv.My dlco is also reduced.

[Guest guest]

All my pulmonary values are checked every six months to monitor

changes. My neuro feels it is important to do sleep studies once a

year, even if you don't have apnea. I do have apnea, but my pressures

have to be increased, due to additional weakness of the respiratory

muscles. I went from 9 to 11 in the first three years and from 11 to

17 this past year. I will have another in Aug. We may be looking at a

V-pap at that time, if I am not being held at the 17.

laurie

> I was just wondering how many of you have respiratory muscle weakness

> and what,if any, treatment you are doing. I have respiratory muscle

> weakness verified by my pft's. I am going to be seeing a new

> pulmonologist at UNC since my other pulmonologist moved away. I have

> to have my pft's repeated prior to seeing him . I hope they include

> the mip,mep, and the mvv.My dlco is also reduced.

>

>

>

>

>

>

>

> 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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>

>

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>

[Guest guest]

I have a bipap with 14/4 settings.

Laurie Fitzgerald laurie.fitzgerald@...> wrote:

All my pulmonary values are checked every six months to monitor

changes. My neuro feels it is important to do sleep studies once a

year, even if you don't have apnea. I do have apnea, but my pressures

have to be increased, due to additional weakness of the respiratory

muscles. I went from 9 to 11 in the first three years and from 11 to

17 this past year. I will have another in Aug. We may be looking at a

V-pap at that time, if I am not being held at the 17.

laurie

> I was just wondering how many of you have respiratory muscle weakness

> and what,if any, treatment you are doing. I have respiratory muscle

> weakness verified by my pft's. I am going to be seeing a new

> pulmonologist at UNC since my other pulmonologist moved away. I have

> to have my pft's repeated prior to seeing him . I hope they include

> the mip,mep, and the mvv.My dlco is also reduced.

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>

[Guest guest]

..........hi laurie, i don't post much, but you may know me as roxann33

on the mito chat. i have a question for you on this subject. last year

i had pulmonary tests done. the first try the tech didn't like the

results, so he made me try again, and again, and again. there were

about 6 or 7 attempts before he was happy with the results. my

pulmonary test came out normal, so nothing was done. if i'm not paying

attention to my breathing it is very shallow and i'm finding my deep

breathing exercises more and more difficult. i have recently gotten

weaker. my doc is aware that i have oxygen hungry (there are times that

i don't have enough air to finish a sentence) and have trouble

breathing. i am going to see my neuro in a couple of weeks and i was

going to ask her if she would give me an order for oxygen, but now i'm

not sure if that is what i should be requesting. i would like to know

what you think. i get the impression that you have more experience in

the various machines out there, i would like your opinion. thank you

ahead of time...........janice CA

>

>

>All my pulmonary values are checked every six months to monitor

>changes. My neuro feels it is important to do sleep studies once a

>year, even if you don't have apnea. I do have apnea, but my pressures

>have to be increased, due to additional weakness of the respiratory

>muscles. I went from 9 to 11 in the first three years and from 11 to

>17 this past year. I will have another in Aug. We may be looking at a

>V-pap at that time, if I am not being held at the 17.

>

>laurie

>

>

>

>

>

[Guest guest]

Janice

I have extreme air hunger if I do too much, but if I am at home and

have done too much, using my C-flex helps. I breath very slowly when

tired or relaxing or sleeping - 2-3 times per minute without good air

exchange. There is a good article on the MDA website called " A Breath

of Fresh Air " . It discusses the types of machines there are and when

they are used. If you can't find it, I can send it to you privately -

it is too long to post to the list.

Oxygen causes free radicals which damage the mitochondrial, so it

should be used with caution. I use to use oxygen with my C-pap, but

the first increase in pressure allowed me to stop using it.

My air hunger also improved (not when over-doing) after my mito

specialist put me on creatine. I wouldn't start it on your own, but

with a doctor's go ahead. It also improved when I started using a

power wheelchair outside the house, allowing me some energy reserves

to use in the house. I now use my wheelchair in the house when very

tired or in a lot of pain.

laurie

> .........hi laurie, i don't post much, but you may know me as roxann33

> on the mito chat. i have a question for you on this subject. last year

> i had pulmonary tests done. the first try the tech didn't like the

> results, so he made me try again, and again, and again. there were

> about 6 or 7 attempts before he was happy with the results. my

> pulmonary test came out normal, so nothing was done. if i'm not paying

> attention to my breathing it is very shallow and i'm finding my deep

> breathing exercises more and more difficult. i have recently gotten

> weaker. my doc is aware that i have oxygen hungry (there are times that

> i don't have enough air to finish a sentence) and have trouble

> breathing. i am going to see my neuro in a couple of weeks and i was

> going to ask her if she would give me an order for oxygen, but now i'm

> not sure if that is what i should be requesting. i would like to know

> what you think. i get the impression that you have more experience in

> the various machines out there, i would like your opinion. thank you

> ahead of time...........janice CA

>

>

>

>

>

>

>

>

> >

> >

> >All my pulmonary values are checked every six months to monitor

> >changes. My neuro feels it is important to do sleep studies once a

> >year, even if you don't have apnea. I do have apnea, but my pressures

> >have to be increased, due to additional weakness of the respiratory

> >muscles. I went from 9 to 11 in the first three years and from 11 to

> >17 this past year. I will have another in Aug. We may be looking at a

> >V-pap at that time, if I am not being held at the 17.

> >

> >laurie

> >

> >

> >

> >

> >

>

>

>

[Guest guest]

My PFT's vary a lot - last year I had asthma for a few months, and my

PFT values were down across the board. I am a strange case though -

normal for me is PFT values all above 100% (based on my age etc.

standard values). Last year when I had my asthma problems, all of my

values had decreased to the 80%'s. My neuro was alarmed enough to

send me for further testing.

So I think a change in values is important too - some of us aren't at

the normal values for our age etc., so it's good to get the PFT's

checked regularly. I had a MAJOR increase in symptoms when my lung

function was down - the asthma medicine seemed to help my mito

symptoms improve.

I have never heard of repeating PFT's more than once, as anyone (even

non-mitoers!) would be expected to have some muscle fatigue as each

test is run. But they do look for a certain profile when they run

the PFT.

I think a sleep study was more important for me - it showed that I

was oxygen-deprived at night, even though my breathing is usually

excellent.

Take care,

RH

>

> .........hi laurie, i don't post much, but you may know me as

roxann33

> on the mito chat. i have a question for you on this subject. last

year

> i had pulmonary tests done. the first try the tech didn't like the

> results, so he made me try again, and again, and again. there were

> about 6 or 7 attempts before he was happy with the results. my

> pulmonary test came out normal, so nothing was done. if i'm not

paying

> attention to my breathing it is very shallow and i'm finding my

deep

> breathing exercises more and more difficult. i have recently

gotten

> weaker. my doc is aware that i have oxygen hungry (there are times

that

> i don't have enough air to finish a sentence) and have trouble

> breathing. i am going to see my neuro in a couple of weeks and i

was

> going to ask her if she would give me an order for oxygen, but now

i'm

> not sure if that is what i should be requesting. i would like to

know

> what you think. i get the impression that you have more experience

in

> the various machines out there, i would like your opinion. thank

you

> ahead of time...........janice CA

>

>

>

>

> >

> >

> >All my pulmonary values are checked every six months to monitor

> >changes. My neuro feels it is important to do sleep studies once a

> >year, even if you don't have apnea. I do have apnea, but my

pressures

> >have to be increased, due to additional weakness of the respiratory

> >muscles. I went from 9 to 11 in the first three years and from 11

to

> >17 this past year. I will have another in Aug. We may be looking

at a

> >V-pap at that time, if I am not being held at the 17.

> >

> >laurie

> >

> >

> >

> >

> >

>

>

>