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In a message dated 01/08/2003 6:06:39 PM Eastern Standard Time,

mitoscottie@... writes:

<< Definitely, muscle pain can indicate several things, but as a major

energy user, they can be the indicator of stress to your system ... even

before you crash!

>>

Jean;

Thank you so much-as a parent I value your knowledge :).

Michele

Mom to Nolan (8) and Alana (7)

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In a message dated 01/08/2003 6:06:39 PM Eastern Standard Time,

mitoscottie@... writes:

<< Definitely, muscle pain can indicate several things, but as a major

energy user, they can be the indicator of stress to your system ... even

before you crash!

>>

Jean;

Thank you so much-as a parent I value your knowledge :).

Michele

Mom to Nolan (8) and Alana (7)

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In a message dated 01/08/2003 6:06:39 PM Eastern Standard Time,

mitoscottie@... writes:

<< Definitely, muscle pain can indicate several things, but as a major

energy user, they can be the indicator of stress to your system ... even

before you crash!

>>

Jean;

Thank you so much-as a parent I value your knowledge :).

Michele

Mom to Nolan (8) and Alana (7)

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Lil Cutie; (If that's not your name, it is now!! <grin>

I would wonder about air hunger and lack of oxygen ..... perhaps from

inefficient use by your mitochondria. This definitely could cause

stress to your body resulting in pain.

Have you ever had a sleep study or an overnight oximetry done?

I don't know that this is what the problem is .... but it is worth investigating.

Perhaps the use of a BiPAP or CPAP would be beneficial.

It is not unusual for the "run of the mill" labs to come back within

the normal range. That is what makes we Mitoes a conundrum for our

doctors!!! Boy .... is that a mouthful, or what?

The fever may also indicate you are "cooking" something .... brewing

an infection somewhere. Have you been in contact with any of the

bugs that are flying around right now?

Upping your Carnitor and/or CoQ (which / or both seems to help you most

subjectively speaking)

Definitely, muscle pain can indicate several things, but as a major

energy user, they can be the indicator of stress to your system ... even

before you crash!

Shepherd, adult mito patient

LILQT4U1984@... wrote:

Hi,

I need some help from all you experts. I have been running a fever

for over a week now and my muscle pain has much more severe. We have

been calling the doc's office and doing everything they suggest but nothing

was helping. My mom took me in yesterday afternoon and I saw the

nurse practitoner. She was very good and took everything down and said

she would go and talk to my doc. I was running a fever while I was

there and my face was the color of ketchup when normally I am stark white

pale. The NP kept saying how sick I looked and that my pulse was

fast and that told her I was in alot of pain. Well she talked to

the doc. and he wanted labs done on me asap. I went straight to the

lab and they were to call this morning. Some other nurse called and said

that all my labs were within normal range and that we were to just treat

the symptoms. We don't know how! Something is wrong and they

have just sorta dropped me again because nothing

Please

contact mito-owner with any problems or questions.

Your

use of Yahoo! Groups is subject to the Yahoo!

Terms of Service.

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Lil Cutie; (If that's not your name, it is now!! <grin>

I would wonder about air hunger and lack of oxygen ..... perhaps from

inefficient use by your mitochondria. This definitely could cause

stress to your body resulting in pain.

Have you ever had a sleep study or an overnight oximetry done?

I don't know that this is what the problem is .... but it is worth investigating.

Perhaps the use of a BiPAP or CPAP would be beneficial.

It is not unusual for the "run of the mill" labs to come back within

the normal range. That is what makes we Mitoes a conundrum for our

doctors!!! Boy .... is that a mouthful, or what?

The fever may also indicate you are "cooking" something .... brewing

an infection somewhere. Have you been in contact with any of the

bugs that are flying around right now?

Upping your Carnitor and/or CoQ (which / or both seems to help you most

subjectively speaking)

Definitely, muscle pain can indicate several things, but as a major

energy user, they can be the indicator of stress to your system ... even

before you crash!

Shepherd, adult mito patient

LILQT4U1984@... wrote:

Hi,

I need some help from all you experts. I have been running a fever

for over a week now and my muscle pain has much more severe. We have

been calling the doc's office and doing everything they suggest but nothing

was helping. My mom took me in yesterday afternoon and I saw the

nurse practitoner. She was very good and took everything down and said

she would go and talk to my doc. I was running a fever while I was

there and my face was the color of ketchup when normally I am stark white

pale. The NP kept saying how sick I looked and that my pulse was

fast and that told her I was in alot of pain. Well she talked to

the doc. and he wanted labs done on me asap. I went straight to the

lab and they were to call this morning. Some other nurse called and said

that all my labs were within normal range and that we were to just treat

the symptoms. We don't know how! Something is wrong and they

have just sorta dropped me again because nothing

Please

contact mito-owner with any problems or questions.

Your

use of Yahoo! Groups is subject to the Yahoo!

Terms of Service.

Link to comment
Share on other sites

Lil Cutie; (If that's not your name, it is now!! <grin>

I would wonder about air hunger and lack of oxygen ..... perhaps from

inefficient use by your mitochondria. This definitely could cause

stress to your body resulting in pain.

Have you ever had a sleep study or an overnight oximetry done?

I don't know that this is what the problem is .... but it is worth investigating.

Perhaps the use of a BiPAP or CPAP would be beneficial.

It is not unusual for the "run of the mill" labs to come back within

the normal range. That is what makes we Mitoes a conundrum for our

doctors!!! Boy .... is that a mouthful, or what?

The fever may also indicate you are "cooking" something .... brewing

an infection somewhere. Have you been in contact with any of the

bugs that are flying around right now?

Upping your Carnitor and/or CoQ (which / or both seems to help you most

subjectively speaking)

Definitely, muscle pain can indicate several things, but as a major

energy user, they can be the indicator of stress to your system ... even

before you crash!

Shepherd, adult mito patient

LILQT4U1984@... wrote:

Hi,

I need some help from all you experts. I have been running a fever

for over a week now and my muscle pain has much more severe. We have

been calling the doc's office and doing everything they suggest but nothing

was helping. My mom took me in yesterday afternoon and I saw the

nurse practitoner. She was very good and took everything down and said

she would go and talk to my doc. I was running a fever while I was

there and my face was the color of ketchup when normally I am stark white

pale. The NP kept saying how sick I looked and that my pulse was

fast and that told her I was in alot of pain. Well she talked to

the doc. and he wanted labs done on me asap. I went straight to the

lab and they were to call this morning. Some other nurse called and said

that all my labs were within normal range and that we were to just treat

the symptoms. We don't know how! Something is wrong and they

have just sorta dropped me again because nothing

Please

contact mito-owner with any problems or questions.

Your

use of Yahoo! Groups is subject to the Yahoo!

Terms of Service.

Link to comment
Share on other sites

,

Thanks for your reply. No those labs haven't been done. I've heard from many on the list now that those should be done. Dr. Cohen is back on Tues so I'm trying to hold off and see what he says. If I get any worse then I will force the issue yet again with my local doc. Thanks for the help.

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,

Thanks for your reply. No those labs haven't been done. I've heard from many on the list now that those should be done. Dr. Cohen is back on Tues so I'm trying to hold off and see what he says. If I get any worse then I will force the issue yet again with my local doc. Thanks for the help.

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,

Thanks for your reply. No those labs haven't been done. I've heard from many on the list now that those should be done. Dr. Cohen is back on Tues so I'm trying to hold off and see what he says. If I get any worse then I will force the issue yet again with my local doc. Thanks for the help.

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Did they check your Lactate levels? Ammonia? From my experiance-never

trust the " everything was within normal range " . Get the numbers from them

and do your own assessing. Your numbers and their range. I often found

with Lily that their " normal " was often the bottom or top number of a

very large range. What about preventing dehydration, are you drinking a

lot? Would some IV therapy help? Again you might be within normal range

- but you are not normal. (sorry!) Remind them.

Sorry you are feeling so poorly. Best of luck- I will hold you in my

thoughts.

Mom to Angel Lily (forever 2yrs3mo) Red(6yrs) & Ada(4yrs) both healthy

and a handful. YEAH!

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

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Did they check your Lactate levels? Ammonia? From my experiance-never

trust the " everything was within normal range " . Get the numbers from them

and do your own assessing. Your numbers and their range. I often found

with Lily that their " normal " was often the bottom or top number of a

very large range. What about preventing dehydration, are you drinking a

lot? Would some IV therapy help? Again you might be within normal range

- but you are not normal. (sorry!) Remind them.

Sorry you are feeling so poorly. Best of luck- I will hold you in my

thoughts.

Mom to Angel Lily (forever 2yrs3mo) Red(6yrs) & Ada(4yrs) both healthy

and a handful. YEAH!

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

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