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I am a newly diagnosed woman with Chiari, and I must say that you all give me

hope, because my symptoms seem so much like what you all discuss. I will have

surgery soon which should relieve some of the pressure I feel, like the fuzzy

head and numb legs and feet. I am just relieved to know that this is a real

thing, and not just me being lazy or uncoordinated!

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I am a newly diagnosed woman with Chiari, and I must say that you all give me

hope, because my symptoms seem so much like what you all discuss. I will have

surgery soon which should relieve some of the pressure I feel, like the fuzzy

head and numb legs and feet. I am just relieved to know that this is a real

thing, and not just me being lazy or uncoordinated!

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I am a newly diagnosed woman with Chiari, and I must say that you all give me

hope, because my symptoms seem so much like what you all discuss. I will have

surgery soon which should relieve some of the pressure I feel, like the fuzzy

head and numb legs and feet. I am just relieved to know that this is a real

thing, and not just me being lazy or uncoordinated!

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,

I can't answer your question fully, but I do know a few things affect how

you feel daily. Things like the barometric pressure can affect you. Bodily

things, like if you got enough sleep last night or, your period can cause

you to feel worse. A virus affects me for a day or two before I have

symptoms from the virus! Sometimes hunger can throw me for a loop, and

other times it doesn't seem to bother me. Maybe others can post things that

seem to affect them.

Unfortunately, this doesn't account for alot of my bad days. But hopefully

it's a start for helping you. Maybe others can post things that seem to

affect them.

Cheri

-----Original Message-----.

>

>Why is it that some days I have a problem with my speech and then some days

I don't, there are times that I have a hard time getting out of bed and then

others I get around okay. I feel the Chiari everyday but I do not

understand what makes the severity of the symptoms come and go. Sometimes I

feel like my friends and family think wonder about me because in the morning

one day I am functioning and then maybe that afternoon I am in allot of pain

and my speech is slurring and my head is killing me.

>

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,

I can't answer your question fully, but I do know a few things affect how

you feel daily. Things like the barometric pressure can affect you. Bodily

things, like if you got enough sleep last night or, your period can cause

you to feel worse. A virus affects me for a day or two before I have

symptoms from the virus! Sometimes hunger can throw me for a loop, and

other times it doesn't seem to bother me. Maybe others can post things that

seem to affect them.

Unfortunately, this doesn't account for alot of my bad days. But hopefully

it's a start for helping you. Maybe others can post things that seem to

affect them.

Cheri

-----Original Message-----.

>

>Why is it that some days I have a problem with my speech and then some days

I don't, there are times that I have a hard time getting out of bed and then

others I get around okay. I feel the Chiari everyday but I do not

understand what makes the severity of the symptoms come and go. Sometimes I

feel like my friends and family think wonder about me because in the morning

one day I am functioning and then maybe that afternoon I am in allot of pain

and my speech is slurring and my head is killing me.

>

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,

I can't answer your question fully, but I do know a few things affect how

you feel daily. Things like the barometric pressure can affect you. Bodily

things, like if you got enough sleep last night or, your period can cause

you to feel worse. A virus affects me for a day or two before I have

symptoms from the virus! Sometimes hunger can throw me for a loop, and

other times it doesn't seem to bother me. Maybe others can post things that

seem to affect them.

Unfortunately, this doesn't account for alot of my bad days. But hopefully

it's a start for helping you. Maybe others can post things that seem to

affect them.

Cheri

-----Original Message-----.

>

>Why is it that some days I have a problem with my speech and then some days

I don't, there are times that I have a hard time getting out of bed and then

others I get around okay. I feel the Chiari everyday but I do not

understand what makes the severity of the symptoms come and go. Sometimes I

feel like my friends and family think wonder about me because in the morning

one day I am functioning and then maybe that afternoon I am in allot of pain

and my speech is slurring and my head is killing me.

>

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Hello, I too have good and bad days and my symptoms come and go. I wonder

why too. I think the doctors do also. My educated guess would be it may

have something to do with spinal fluid flow and where in the brain its

putting pressure. And the like. I know that our spinal fluid " changes " ,

" replenishes " four times a day. Maybe it has something to do with that.

NOTE: I said this was my educated GUESS.

On the days where my fine coordination and speech problem are the worst and

I am tripping over my own feet there doesn't seem to be anything in my

environment nor anything that i injested that appears to trigger these

episodes...ergo by reasoning that it might be due to internal flow and

pressure.

Like if you have a tumor in a particular part of the brain and you may have

double vision...because the tumor is pressing on the part of the brian that

controls the optics.

In Chiari the cerebellum is considered our " TREE OF LIFE " . And if i'm not

mistaken...All our function originate there. Breathing etc. So it would seem

logical to me that if the cerebellum is swollen even a little these

automatic functions could be affected.

You really have mme curious now to seek the answer to the why...think I'll

sign out and do some surfing into the realm of how the brian functions.

Theres a great resouce of info on the " Medscape " and WEB MD " .

Hope you all feel good today.

>

>To: <chiari >

>Subject: question

>Date: Mon, 25 Feb 2002 08:58:43 -0700

>

>Hi! My name is Michele and I have been apart of this group for a few

>months. I read the questions that others have, but now I have one of my

>own.

>

>Why is it that some days I have a problem with my speech and then some days

>I don't, there are times that I have a hard time getting out of bed and

>then others I get around okay. I feel the Chiari everyday but I do not

>understand what makes the severity of the symptoms come and go. Sometimes I

>feel like my friends and family think wonder about me because in the

>morning one day I am functioning and then maybe that afternoon I am in

>allot of pain and my speech is slurring and my head is killing me.

>

>I guess I do not understand how the Chiari is always there and the symptoms

>come and go?

>

>Thank you,

>Michele

>

>

>

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Hello, I too have good and bad days and my symptoms come and go. I wonder

why too. I think the doctors do also. My educated guess would be it may

have something to do with spinal fluid flow and where in the brain its

putting pressure. And the like. I know that our spinal fluid " changes " ,

" replenishes " four times a day. Maybe it has something to do with that.

NOTE: I said this was my educated GUESS.

On the days where my fine coordination and speech problem are the worst and

I am tripping over my own feet there doesn't seem to be anything in my

environment nor anything that i injested that appears to trigger these

episodes...ergo by reasoning that it might be due to internal flow and

pressure.

Like if you have a tumor in a particular part of the brain and you may have

double vision...because the tumor is pressing on the part of the brian that

controls the optics.

In Chiari the cerebellum is considered our " TREE OF LIFE " . And if i'm not

mistaken...All our function originate there. Breathing etc. So it would seem

logical to me that if the cerebellum is swollen even a little these

automatic functions could be affected.

You really have mme curious now to seek the answer to the why...think I'll

sign out and do some surfing into the realm of how the brian functions.

Theres a great resouce of info on the " Medscape " and WEB MD " .

Hope you all feel good today.

>

>To: <chiari >

>Subject: question

>Date: Mon, 25 Feb 2002 08:58:43 -0700

>

>Hi! My name is Michele and I have been apart of this group for a few

>months. I read the questions that others have, but now I have one of my

>own.

>

>Why is it that some days I have a problem with my speech and then some days

>I don't, there are times that I have a hard time getting out of bed and

>then others I get around okay. I feel the Chiari everyday but I do not

>understand what makes the severity of the symptoms come and go. Sometimes I

>feel like my friends and family think wonder about me because in the

>morning one day I am functioning and then maybe that afternoon I am in

>allot of pain and my speech is slurring and my head is killing me.

>

>I guess I do not understand how the Chiari is always there and the symptoms

>come and go?

>

>Thank you,

>Michele

>

>

>

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  • 2 weeks later...
Guest guest

<< Is it normal (for Chiari) to have your top lip and near your cheek bones

to go numb kind of like you got a novacaine shot? WHY?

>>

Judy ...this is a symptom thats been reported in the medical literature

before ...but its always wise to check with your doctor too ..its possible to

have more than one problem at the same time .

One way chiari can cause this sort of sensation would be the csf fluid

presure in your head going up enough to cause some presure on the middle

branch of the trigeminal nerve . I experienced a total numbness of all three

branches of the trigeminal nerve before surgery ..it was the first symptom my

doctor took seriously , and led to MRI's being ordered ...I have multiple

sclerosis too ..and the doctors wern't sure which had caused it in the end .

It did improve ..and has come and gone intermittantly since ..not always the

full three branches involved .

Please don't assume anything ...know that its possible its related to chiari

and seek your doctors opinion .

( Another possible cause would be Lymes disease for example ..its just not a

good idea to make self dx. guesses ) .

in Paradise

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Guest guest

<< Is it normal (for Chiari) to have your top lip and near your cheek bones

to go numb kind of like you got a novacaine shot? WHY?

>>

Judy ...this is a symptom thats been reported in the medical literature

before ...but its always wise to check with your doctor too ..its possible to

have more than one problem at the same time .

One way chiari can cause this sort of sensation would be the csf fluid

presure in your head going up enough to cause some presure on the middle

branch of the trigeminal nerve . I experienced a total numbness of all three

branches of the trigeminal nerve before surgery ..it was the first symptom my

doctor took seriously , and led to MRI's being ordered ...I have multiple

sclerosis too ..and the doctors wern't sure which had caused it in the end .

It did improve ..and has come and gone intermittantly since ..not always the

full three branches involved .

Please don't assume anything ...know that its possible its related to chiari

and seek your doctors opinion .

( Another possible cause would be Lymes disease for example ..its just not a

good idea to make self dx. guesses ) .

in Paradise

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Guest guest

<< Is it normal (for Chiari) to have your top lip and near your cheek bones

to go numb kind of like you got a novacaine shot? WHY?

>>

Judy ...this is a symptom thats been reported in the medical literature

before ...but its always wise to check with your doctor too ..its possible to

have more than one problem at the same time .

One way chiari can cause this sort of sensation would be the csf fluid

presure in your head going up enough to cause some presure on the middle

branch of the trigeminal nerve . I experienced a total numbness of all three

branches of the trigeminal nerve before surgery ..it was the first symptom my

doctor took seriously , and led to MRI's being ordered ...I have multiple

sclerosis too ..and the doctors wern't sure which had caused it in the end .

It did improve ..and has come and gone intermittantly since ..not always the

full three branches involved .

Please don't assume anything ...know that its possible its related to chiari

and seek your doctors opinion .

( Another possible cause would be Lymes disease for example ..its just not a

good idea to make self dx. guesses ) .

in Paradise

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  • 2 months later...
Guest guest

Autonomic Dysreflexia (AD), also known as Hyperreflexia, is a potentially

dangerous complication of spinal cord injury (SCI). In AD, an individual's

blood pressure may rise to dangerous levels and if not treated can lead to

stroke and possibly death. Individuals with SCI at the T-6 level or above are

at greater risk. AD usually occurs because of a noxious (irritating) stimulus

below the level of the injury. Symptoms include headache, facial flush,

perspiration, and a stuffy nose.

AD occurs primarily because of an imbalance in the body systems which control

the blood pressure. The human body is an incredibly complicated and

beautifully balanced machine. There are balances to each system of the body,

including the blood pressure. One of the major ways the body controls blood

pressure is by tightening or relaxing little muscles around the blood

vessels. When the muscles contract, the blood vessels get smaller and blood

pressure increases. Imagine a garden hose with water streaming through it;

when you put your thumb over the opening of the hose, reducing the opening

for the water to flow through, the water shoots out at a higher pressure.

Similarly, when the blood vessels are smaller, the blood rushes around your

body at higher pressure.

When a noxious stimulus occurs, a reflex is initiated that causes the blood

vessels to constrict and raises the blood pressure. In an intact spinal cord,

this same stimulus also sets in motion another set of reflexes that moderates

the constriction of blood vessels. However, in someone who has SCI at the T-6

level or above, the signal which tells the blood vessels to relax cannot get

through the spinal cord because of the injury. Some of the nerves at the T-6

level also control the blood flow to and from the gut, which is a large

reservoir of blood. Uncontrolled activity of these nerves may cause the blood

from the gut to flow into the rest of the blood system. The result is that

blood pressure can increase to dangerous levels and the increase in blood

pressure must be controlled by outside means.

Love and Angels,

Joanna/Atlanta (16 years old)

Chiari 1 Malformation-17mm

Syrinx from C1-T6 <-----dissipating as we speak!

Neurocardiogenic Syncope (Medications are making a big difference)

Decompression, Laminectomy, Duraplasty-7/27/01

Dura exploration and surgical debridement of staph infection-9/8/01

Allergic to everything, finally found a few that won't land me in the ER,

lol!

I am still having some residual problems, but I am doing wonderfully!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Angels can fly because they take themselves lightly!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

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Guest guest

Autonomic Dysreflexia (AD), also known as Hyperreflexia, is a potentially

dangerous complication of spinal cord injury (SCI). In AD, an individual's

blood pressure may rise to dangerous levels and if not treated can lead to

stroke and possibly death. Individuals with SCI at the T-6 level or above are

at greater risk. AD usually occurs because of a noxious (irritating) stimulus

below the level of the injury. Symptoms include headache, facial flush,

perspiration, and a stuffy nose.

AD occurs primarily because of an imbalance in the body systems which control

the blood pressure. The human body is an incredibly complicated and

beautifully balanced machine. There are balances to each system of the body,

including the blood pressure. One of the major ways the body controls blood

pressure is by tightening or relaxing little muscles around the blood

vessels. When the muscles contract, the blood vessels get smaller and blood

pressure increases. Imagine a garden hose with water streaming through it;

when you put your thumb over the opening of the hose, reducing the opening

for the water to flow through, the water shoots out at a higher pressure.

Similarly, when the blood vessels are smaller, the blood rushes around your

body at higher pressure.

When a noxious stimulus occurs, a reflex is initiated that causes the blood

vessels to constrict and raises the blood pressure. In an intact spinal cord,

this same stimulus also sets in motion another set of reflexes that moderates

the constriction of blood vessels. However, in someone who has SCI at the T-6

level or above, the signal which tells the blood vessels to relax cannot get

through the spinal cord because of the injury. Some of the nerves at the T-6

level also control the blood flow to and from the gut, which is a large

reservoir of blood. Uncontrolled activity of these nerves may cause the blood

from the gut to flow into the rest of the blood system. The result is that

blood pressure can increase to dangerous levels and the increase in blood

pressure must be controlled by outside means.

Love and Angels,

Joanna/Atlanta (16 years old)

Chiari 1 Malformation-17mm

Syrinx from C1-T6 <-----dissipating as we speak!

Neurocardiogenic Syncope (Medications are making a big difference)

Decompression, Laminectomy, Duraplasty-7/27/01

Dura exploration and surgical debridement of staph infection-9/8/01

Allergic to everything, finally found a few that won't land me in the ER,

lol!

I am still having some residual problems, but I am doing wonderfully!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Angels can fly because they take themselves lightly!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Link to comment
Share on other sites

Guest guest

Autonomic Dysreflexia (AD), also known as Hyperreflexia, is a potentially

dangerous complication of spinal cord injury (SCI). In AD, an individual's

blood pressure may rise to dangerous levels and if not treated can lead to

stroke and possibly death. Individuals with SCI at the T-6 level or above are

at greater risk. AD usually occurs because of a noxious (irritating) stimulus

below the level of the injury. Symptoms include headache, facial flush,

perspiration, and a stuffy nose.

AD occurs primarily because of an imbalance in the body systems which control

the blood pressure. The human body is an incredibly complicated and

beautifully balanced machine. There are balances to each system of the body,

including the blood pressure. One of the major ways the body controls blood

pressure is by tightening or relaxing little muscles around the blood

vessels. When the muscles contract, the blood vessels get smaller and blood

pressure increases. Imagine a garden hose with water streaming through it;

when you put your thumb over the opening of the hose, reducing the opening

for the water to flow through, the water shoots out at a higher pressure.

Similarly, when the blood vessels are smaller, the blood rushes around your

body at higher pressure.

When a noxious stimulus occurs, a reflex is initiated that causes the blood

vessels to constrict and raises the blood pressure. In an intact spinal cord,

this same stimulus also sets in motion another set of reflexes that moderates

the constriction of blood vessels. However, in someone who has SCI at the T-6

level or above, the signal which tells the blood vessels to relax cannot get

through the spinal cord because of the injury. Some of the nerves at the T-6

level also control the blood flow to and from the gut, which is a large

reservoir of blood. Uncontrolled activity of these nerves may cause the blood

from the gut to flow into the rest of the blood system. The result is that

blood pressure can increase to dangerous levels and the increase in blood

pressure must be controlled by outside means.

Love and Angels,

Joanna/Atlanta (16 years old)

Chiari 1 Malformation-17mm

Syrinx from C1-T6 <-----dissipating as we speak!

Neurocardiogenic Syncope (Medications are making a big difference)

Decompression, Laminectomy, Duraplasty-7/27/01

Dura exploration and surgical debridement of staph infection-9/8/01

Allergic to everything, finally found a few that won't land me in the ER,

lol!

I am still having some residual problems, but I am doing wonderfully!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Angels can fly because they take themselves lightly!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

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  • 8 months later...

Here are a few. Hope this helps!

Pattie

> s/l reticulus,

reticulocytes

> sycom, peripheral smeal,

I have NO idea. Can you give a better s/l?

> fairton level

ferritin level

> , epil level,

could be EP level (erythropoietin level)?

> sed rate

This is fine - short for sedimentation rate.

> S-pap

SPEP (serum protein electrophoresis)

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Here are a few. Hope this helps!

Pattie

> s/l reticulus,

reticulocytes

> sycom, peripheral smeal,

I have NO idea. Can you give a better s/l?

> fairton level

ferritin level

> , epil level,

could be EP level (erythropoietin level)?

> sed rate

This is fine - short for sedimentation rate.

> S-pap

SPEP (serum protein electrophoresis)

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Becky, Instead of reticulus, sycom, that would be reticulocyte count without the

comma in between, the next is peripheral smear, ferritin level, epi level I am

not sure about, sed rate, SPEP (serum protein electrophoresis), and UA.

Margaret

>>> " " 01/31/03 07:49PM >>>

Hello all,

Doctor is doing a complete workup to check for anemia. He will be doing the

following procedures: CBC, CMP, s/l reticulus, sycom, peripheral smeal, fairton

level, epil level, sed rate, S-pap and a UA.

I am not sure if I have these right. I am having trouble finding some of them.

If anyone sees anyone that I have wrong, please let me know.

Thanks,

Becky

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Becky, Instead of reticulus, sycom, that would be reticulocyte count without the

comma in between, the next is peripheral smear, ferritin level, epi level I am

not sure about, sed rate, SPEP (serum protein electrophoresis), and UA.

Margaret

>>> " " 01/31/03 07:49PM >>>

Hello all,

Doctor is doing a complete workup to check for anemia. He will be doing the

following procedures: CBC, CMP, s/l reticulus, sycom, peripheral smeal, fairton

level, epil level, sed rate, S-pap and a UA.

I am not sure if I have these right. I am having trouble finding some of them.

If anyone sees anyone that I have wrong, please let me know.

Thanks,

Becky

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Someone else already gave most of the answers, but they were confused by the

sycom, peripheral smeal. I don't know about the peripheral smeal either,

but the sycom is probably the end of what they suggested. Reticulus, sycom

is probably reticulocyte count. :o)

Joy

----Original Message Follows----

To: <nmtc >

Subject: Question

Date: Fri, 31 Jan 2003 19:49:54 -0500

Hello all,

Doctor is doing a complete workup to check for anemia. He will be doing the

following procedures: CBC, CMP, s/l reticulus, sycom, peripheral smeal,

fairton level, epil level, sed rate, S-pap and a UA.

I am not sure if I have these right. I am having trouble finding some of

them. If anyone sees anyone that I have wrong, please let me know.

Thanks,

Becky

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Someone else already gave most of the answers, but they were confused by the

sycom, peripheral smeal. I don't know about the peripheral smeal either,

but the sycom is probably the end of what they suggested. Reticulus, sycom

is probably reticulocyte count. :o)

Joy

----Original Message Follows----

To: <nmtc >

Subject: Question

Date: Fri, 31 Jan 2003 19:49:54 -0500

Hello all,

Doctor is doing a complete workup to check for anemia. He will be doing the

following procedures: CBC, CMP, s/l reticulus, sycom, peripheral smeal,

fairton level, epil level, sed rate, S-pap and a UA.

I am not sure if I have these right. I am having trouble finding some of

them. If anyone sees anyone that I have wrong, please let me know.

Thanks,

Becky

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Someone else already gave most of the answers, but they were confused by the

sycom, peripheral smeal. I don't know about the peripheral smeal either,

but the sycom is probably the end of what they suggested. Reticulus, sycom

is probably reticulocyte count. :o)

Joy

----Original Message Follows----

To: <nmtc >

Subject: Question

Date: Fri, 31 Jan 2003 19:49:54 -0500

Hello all,

Doctor is doing a complete workup to check for anemia. He will be doing the

following procedures: CBC, CMP, s/l reticulus, sycom, peripheral smeal,

fairton level, epil level, sed rate, S-pap and a UA.

I am not sure if I have these right. I am having trouble finding some of

them. If anyone sees anyone that I have wrong, please let me know.

Thanks,

Becky

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There is a Hill-Sachs lesion per the Medical Phrase Index. :o)

Question

Hey all,

Doc is dictating the following:

Outside x-rays show what appears to be a s/l heel sacks defect present on

internal rotation view.

Anyone have any suggestions?

Thanks for your help.

Becky

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I don't remember whether it was this list or another I'm on, but I do

remember just having seen a quip that when someone said that France had

declared they would not back us up or participate in any way, Ross Perot was

reported to have replied that going to war without France would be akin to

going deer hunting without an accordian.

That's the best I can remember it. Was that what you were looking for?

Lynn

question

Okay...I may or may not be losing my mind, but in this fog from being sick,

it seems to me I remember someone posting a thing on France and their

wars....does anyone remember that? If so, could someone email it to me? My

DH would like to read it and I somehow deleted it (could be the 700+ pieces

of email I whipped through trying desperately to clean up my mailbox in

between attempting to get caught up with work - which I hope to get caught

up

with this weekend - thank God for wonderful understanding clients). If

anyone remembers this, PLEASE please please send it to me. Thanks!

D

TO UNSUBSCRIBE send a blank email to NMTC-unsubscribe

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I don't remember whether it was this list or another I'm on, but I do

remember just having seen a quip that when someone said that France had

declared they would not back us up or participate in any way, Ross Perot was

reported to have replied that going to war without France would be akin to

going deer hunting without an accordian.

That's the best I can remember it. Was that what you were looking for?

Lynn

question

Okay...I may or may not be losing my mind, but in this fog from being sick,

it seems to me I remember someone posting a thing on France and their

wars....does anyone remember that? If so, could someone email it to me? My

DH would like to read it and I somehow deleted it (could be the 700+ pieces

of email I whipped through trying desperately to clean up my mailbox in

between attempting to get caught up with work - which I hope to get caught

up

with this weekend - thank God for wonderful understanding clients). If

anyone remembers this, PLEASE please please send it to me. Thanks!

D

TO UNSUBSCRIBE send a blank email to NMTC-unsubscribe

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I don't remember whether it was this list or another I'm on, but I do

remember just having seen a quip that when someone said that France had

declared they would not back us up or participate in any way, Ross Perot was

reported to have replied that going to war without France would be akin to

going deer hunting without an accordian.

That's the best I can remember it. Was that what you were looking for?

Lynn

question

Okay...I may or may not be losing my mind, but in this fog from being sick,

it seems to me I remember someone posting a thing on France and their

wars....does anyone remember that? If so, could someone email it to me? My

DH would like to read it and I somehow deleted it (could be the 700+ pieces

of email I whipped through trying desperately to clean up my mailbox in

between attempting to get caught up with work - which I hope to get caught

up

with this weekend - thank God for wonderful understanding clients). If

anyone remembers this, PLEASE please please send it to me. Thanks!

D

TO UNSUBSCRIBE send a blank email to NMTC-unsubscribe

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