More questions about breathing problem

[Guest guest]

Hi everyone, I just wanted to ask another question about the

breathing problems I am having. I got really lightheaded yesterday

and really weak, my husband was worried and took me to the hospital.

As much trouble that I had breathing everything was okay, my oxygen

level was fine 98% chest x-ray was fine, ekg. I feel like I am losing

my mind. No asthma, told just to wait to see when I go to the

pulmonary doctor to see what he says.

Thats the 15th. As of now I can't even walk to the next room without

being out of breath. What will the pulmonary doctor do. The thing is

I keep going to these specialist at 25.00 a pop to just have them say

they have no clue, or they want me to go to another specilist. I know

money shouldn't matter but I have so many hospital bills right now.

If he just repeats the same test that they did in the hospital I

don't see how it will be worth it.

How can my oxygen level be okay???

Thanks everyone I am glad I found this group. Oh and for anyone who

has had a muscle biopsy is it all that bad?? I go for the consult on

the 29th.

[Guest guest]

, I forget what it is called, but there is a condition where the

oxygen is present, but not able to be used, and so it just circulates around

and around........

Also, air hunger is often caused by the fact we need the energy, so we need

oxygen to create it, so we get air hunger but the problem isnt really lack

of oxygen, it is the lack of ability to use it to create the energy we need,

because of our metabolic issues. Oxygen may be present and accounted for,

but doesnt mean it is being used!

> Hi everyone, I just wanted to ask another question about the

> breathing problems I am having. I got really lightheaded yesterday

> and really weak, my husband was worried and took me to the hospital.

> As much trouble that I had breathing everything was okay, my oxygen

> level was fine 98% chest x-ray was fine, ekg. I feel like I am losing

> my mind. No asthma, told just to wait to see when I go to the

> pulmonary doctor to see what he says.

> Thats the 15th. As of now I can't even walk to the next room without

> being out of breath. What will the pulmonary doctor do. The thing is

> I keep going to these specialist at 25.00 a pop to just have them say

> they have no clue, or they want me to go to another specilist. I know

> money shouldn't matter but I have so many hospital bills right now.

> If he just repeats the same test that they did in the hospital I

> don't see how it will be worth it.

> How can my oxygen level be okay???

> Thanks everyone I am glad I found this group. Oh and for anyone who

> has had a muscle biopsy is it all that bad?? I go for the consult on

> the 29th.

>

>

[Guest guest]

My O2 levels are usually normal, as the other tests as well. My pulmonary

doc has ordered a sleep study, echocardiogram, pulmonary function test,

chest X-ray and blood gases. He says that blood gases tell more than the O2

level. All this is just to rule out anything other than the air hunger of

mito. I haven't seen him to have all this put together, but I think it is

just the mito.

One suggestion I might make is to keep a notebook to prevent repeat of

testing. Get a notebook and then get all your reports and lab results. I

have all my lab work done at the hospital, so I just pick them up when

there or if I have another doctor's appointment. I get the reports from the

doctor who ordered them. I have the notebook in a cloth bag and it is always

in the same place in case I need it in a hurry.

I have learned to live with the air hunger. It is not pleasant or

conveniant, but there and I have learned to adapt. I walk slowly from room

to room and use my walker when it is bad. I sit whenever I can. I sit to

load my washer and dryer, to prepare food, cook, do dishes, etc. This then

gives me a little more time without the air hunger.

I hope you get some answers that will help you.

laurie

>

> Reply-To:

> Date: Tue, 06 Jul 2004 11:57:11 -0000

> To:

> Subject: More questions about breathing problem

>

> Hi everyone, I just wanted to ask another question about the

> breathing problems I am having. I got really lightheaded yesterday

> and really weak, my husband was worried and took me to the hospital.

> As much trouble that I had breathing everything was okay, my oxygen

> level was fine 98% chest x-ray was fine, ekg. I feel like I am losing

> my mind. No asthma, told just to wait to see when I go to the

> pulmonary doctor to see what he says.

> Thats the 15th. As of now I can't even walk to the next room without

> being out of breath. What will the pulmonary doctor do. The thing is

> I keep going to these specialist at 25.00 a pop to just have them say

> they have no clue, or they want me to go to another specilist. I know

> money shouldn't matter but I have so many hospital bills right now.

> If he just repeats the same test that they did in the hospital I

> don't see how it will be worth it.

> How can my oxygen level be okay???

> Thanks everyone I am glad I found this group. Oh and for anyone who

> has had a muscle biopsy is it all that bad?? I go for the consult on

> the 29th.

>

>

>

>

> 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]

Thanks, I really think I am going nuts and am afraid everyone else does to even

though they know I am having difficulties. I am learning to just walk slow, sit

down as much as possible (with 2 little ones its hard to do). I will let you

know when I go on the 15th what the pulmonary doctor says. Thanks again

Laureta Fitzgerald lfitzger@...> wrote:

My O2 levels are usually normal, as the other tests as well. My pulmonary

doc has ordered a sleep study, echocardiogram, pulmonary function test,

chest X-ray and blood gases. He says that blood gases tell more than the O2

level. All this is just to rule out anything other than the air hunger of

mito. I haven't seen him to have all this put together, but I think it is

just the mito.

One suggestion I might make is to keep a notebook to prevent repeat of

testing. Get a notebook and then get all your reports and lab results. I

have all my lab work done at the hospital, so I just pick them up when

there or if I have another doctor's appointment. I get the reports from the

doctor who ordered them. I have the notebook in a cloth bag and it is always

in the same place in case I need it in a hurry.

I have learned to live with the air hunger. It is not pleasant or

conveniant, but there and I have learned to adapt. I walk slowly from room

to room and use my walker when it is bad. I sit whenever I can. I sit to

load my washer and dryer, to prepare food, cook, do dishes, etc. This then

gives me a little more time without the air hunger.

I hope you get some answers that will help you.

laurie

>

> Reply-To:

> Date: Tue, 06 Jul 2004 11:57:11 -0000

> To:

> Subject: More questions about breathing problem

>

> Hi everyone, I just wanted to ask another question about the

> breathing problems I am having. I got really lightheaded yesterday

> and really weak, my husband was worried and took me to the hospital.

> As much trouble that I had breathing everything was okay, my oxygen

> level was fine 98% chest x-ray was fine, ekg. I feel like I am losing

> my mind. No asthma, told just to wait to see when I go to the

> pulmonary doctor to see what he says.

> Thats the 15th. As of now I can't even walk to the next room without

> being out of breath. What will the pulmonary doctor do. The thing is

> I keep going to these specialist at 25.00 a pop to just have them say

> they have no clue, or they want me to go to another specilist. I know

> money shouldn't matter but I have so many hospital bills right now.

> If he just repeats the same test that they did in the hospital I

> don't see how it will be worth it.

> How can my oxygen level be okay???

> Thanks everyone I am glad I found this group. Oh and for anyone who

> has had a muscle biopsy is it all that bad?? I go for the consult on

> the 29th.

>

>

>

>

> 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]

Branda

Little ones do make it difficult. I can remember those days.

I'll keep you in my thoughts.

laurie

>

> Reply-To:

> Date: Tue, 6 Jul 2004 10:04:54 -0700 (PDT)

> To:

> Subject: Re: More questions about breathing problem

>

> Thanks, I really think I am going nuts and am afraid everyone else does to

> even though they know I am having difficulties. I am learning to just walk

> slow, sit down as much as possible (with 2 little ones its hard to do). I will

> let you know when I go on the 15th what the pulmonary doctor says. Thanks

> again

>

>

> Laureta Fitzgerald lfitzger@...> wrote:

>

>

> My O2 levels are usually normal, as the other tests as well. My pulmonary

> doc has ordered a sleep study, echocardiogram, pulmonary function test,

> chest X-ray and blood gases. He says that blood gases tell more than the O2

> level. All this is just to rule out anything other than the air hunger of

> mito. I haven't seen him to have all this put together, but I think it is

> just the mito.

>

> One suggestion I might make is to keep a notebook to prevent repeat of

> testing. Get a notebook and then get all your reports and lab results. I

> have all my lab work done at the hospital, so I just pick them up when

> there or if I have another doctor's appointment. I get the reports from the

> doctor who ordered them. I have the notebook in a cloth bag and it is always

> in the same place in case I need it in a hurry.

>

> I have learned to live with the air hunger. It is not pleasant or

> conveniant, but there and I have learned to adapt. I walk slowly from room

> to room and use my walker when it is bad. I sit whenever I can. I sit to

> load my washer and dryer, to prepare food, cook, do dishes, etc. This then

> gives me a little more time without the air hunger.

>

> I hope you get some answers that will help you.

>

> laurie

>

>>

>> Reply-To:

>> Date: Tue, 06 Jul 2004 11:57:11 -0000

>> To:

>> Subject: More questions about breathing problem

>>

>> Hi everyone, I just wanted to ask another question about the

>> breathing problems I am having. I got really lightheaded yesterday

>> and really weak, my husband was worried and took me to the hospital.

>> As much trouble that I had breathing everything was okay, my oxygen

>> level was fine 98% chest x-ray was fine, ekg. I feel like I am losing

>> my mind. No asthma, told just to wait to see when I go to the

>> pulmonary doctor to see what he says.

>> Thats the 15th. As of now I can't even walk to the next room without

>> being out of breath. What will the pulmonary doctor do. The thing is

>> I keep going to these specialist at 25.00 a pop to just have them say

>> they have no clue, or they want me to go to another specilist. I know

>> money shouldn't matter but I have so many hospital bills right now.

>> If he just repeats the same test that they did in the hospital I

>> don't see how it will be worth it.

>> How can my oxygen level be okay???

>> Thanks everyone I am glad I found this group. Oh and for anyone who

>> has had a muscle biopsy is it all that bad?? I go for the consult on

>> the 29th.

>>

>>

>>

>>

>> 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]

you are having the same symptoms as my husband Duane, I took him to the

hospital and dr I cant tell you how many times to find out that they did not

know, but that is what they would not admit to, so they told us it was

anxiety and gave him anti anxiety drugs, because his oxygen level was always

about 98% but he was to the eye visibly out of breath they chalked it up to

stress as always, very frustrating,....

However I finally found a mito Dr and he said that this is just one of the

symptoms of mito when carbon dioxide fills the lungs and the lungs cant

adequately express it the oxygen cant come in he told me to put a paper bag

over his mouth and let him breath in to it you need to make the bag move.

the dizziness he told me was hyperventalazation trying to get oxygen in the

lungs

I hope this helps Do you have a mito DR?

I would be interested to see what he or she has to say and see if it was the

same.

Hugs

Jan wife of Duane

More questions about breathing problem

> Hi everyone, I just wanted to ask another question about the

> breathing problems I am having. I got really lightheaded yesterday

> and really weak, my husband was worried and took me to the hospital.

> As much trouble that I had breathing everything was okay, my oxygen

> level was fine 98% chest x-ray was fine, ekg. I feel like I am losing

> my mind. No asthma, told just to wait to see when I go to the

> pulmonary doctor to see what he says.

> Thats the 15th. As of now I can't even walk to the next room without

> being out of breath. What will the pulmonary doctor do. The thing is

> I keep going to these specialist at 25.00 a pop to just have them say

> they have no clue, or they want me to go to another specilist. I know

> money shouldn't matter but I have so many hospital bills right now.

> If he just repeats the same test that they did in the hospital I

> don't see how it will be worth it.

> How can my oxygen level be okay???

> Thanks everyone I am glad I found this group. Oh and for anyone who

> has had a muscle biopsy is it all that bad?? I go for the consult on

> the 29th.

>

>

>

>

>

> 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.

>

>