MSA is the SAME as Shy-Drager Syndrome

[Guest guest]

For those who are new or who haven't read this yet I want to make sure you

know... because I'm still getting people writing me who don't realize this.

Multiple System Atrophy is the NEW name for Shy-Drager Syndrome (SDS). It

is also the NEW name for Striatonigral Degeneration(SND). In fact it isn't

even that new. It was 1969 when Drs. Graham and Oppenheimer realized that

Shy-Drager Syndrome, Striatonigral Degeneration and some cases of

non-hereditary Olivopontocerebellar atrophy(OPCA) were actually ONE DISEASE.

They knew this because they observed something in common in autopsies on the

brains of people who had been diagnosed with these three disorders which

before that time were thought to be separate diseases. They decided to come

up with a new name for this disease... Multiple System Atrophy. This name

has held up over time and is now the accepted terminology recommended by the

Consensus Committee on Multiple System Atrophy.

From http://www.emedicine.com/NEURO/topic354.htm :

" In 1969, Graham and Oppenheimer coined the term multiple system atrophy

(MSA) to combine the common features seen in the 3 manifestations. The

" consensus statement on the diagnosis of multiple system atrophy " in 1999

recommended the use of MSA-P to replace SND, and MSA-C for sporadic OPCA.

The consensus group also concluded that the term Shy-Drager syndrome is no

longer useful. They described the clinical features of the disease and set

the criteria for the diagnosis of possible, probable, and definite MSA "

See also http://www.emedicine.com/neuro/topic671.htm

[Guest guest]

Pam

Would it be useful to change the group's name to reflect this?

Best wishes

Cannon

Pam Bower wrote:

>

> For those who are new or who haven't read this yet I want to make sure you

> know... because I'm still getting people writing me who don't realize this.

>

> Multiple System Atrophy is the NEW name for Shy-Drager Syndrome (SDS). It

> is also the NEW name for Striatonigral Degeneration(SND). In fact it isn't

> even that new. It was 1969 when Drs. Graham and Oppenheimer realized that

> Shy-Drager Syndrome, Striatonigral Degeneration and some cases of

> non-hereditary Olivopontocerebellar atrophy(OPCA) were actually ONE DISEASE.

> They knew this because they observed something in common in autopsies on the

> brains of people who had been diagnosed with these three disorders which

> before that time were thought to be separate diseases. They decided to come

> up with a new name for this disease... Multiple System Atrophy. This name

> has held up over time and is now the accepted terminology recommended by the

> Consensus Committee on Multiple System Atrophy.

>

> >From http://www.emedicine.com/NEURO/topic354.htm :

> " In 1969, Graham and Oppenheimer coined the term multiple system atrophy

> (MSA) to combine the common features seen in the 3 manifestations. The

> " consensus statement on the diagnosis of multiple system atrophy " in 1999

> recommended the use of MSA-P to replace SND, and MSA-C for sporadic OPCA.

> The consensus group also concluded that the term Shy-Drager syndrome is no

> longer useful. They described the clinical features of the disease and set

> the criteria for the diagnosis of possible, probable, and definite MSA "

>

> See also http://www.emedicine.com/neuro/topic671.htm

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

Hi , We wanted to change the name 2 years ago when this group moved from

the Vanderbilt server but I think someone else had a group already set up

called MSA. We had to settle for just putting on the subject line.

Take care,

Pam

Re: MSA is the SAME as Shy-Drager Syndrome

Pam

Would it be useful to change the group's name to reflect this?

Best wishes

Cannon

Pam Bower wrote:

>

> For those who are new or who haven't read this yet I want to make sure you

> know... because I'm still getting people writing me who don't realize

this.

>

> Multiple System Atrophy is the NEW name for Shy-Drager Syndrome (SDS). It

> is also the NEW name for Striatonigral Degeneration(SND). In fact it

isn't

> even that new. It was 1969 when Drs. Graham and Oppenheimer realized that

> Shy-Drager Syndrome, Striatonigral Degeneration and some cases of

> non-hereditary Olivopontocerebellar atrophy(OPCA) were actually ONE

DISEASE.

> They knew this because they observed something in common in autopsies on

the

> brains of people who had been diagnosed with these three disorders which

> before that time were thought to be separate diseases. They decided to

come

> up with a new name for this disease... Multiple System Atrophy. This name

> has held up over time and is now the accepted terminology recommended by

the

> Consensus Committee on Multiple System Atrophy.

>

> >From http://www.emedicine.com/NEURO/topic354.htm :

> " In 1969, Graham and Oppenheimer coined the term multiple system atrophy

> (MSA) to combine the common features seen in the 3 manifestations. The

> " consensus statement on the diagnosis of multiple system atrophy " in 1999

> recommended the use of MSA-P to replace SND, and MSA-C for sporadic OPCA.

> The consensus group also concluded that the term Shy-Drager syndrome is no

> longer useful. They described the clinical features of the disease and set

> the criteria for the diagnosis of possible, probable, and definite MSA "

>

> See also http://www.emedicine.com/neuro/topic671.htm

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

,

The Missouri State Alumni took up MSA, we have had them accidently come into our

Chats also.

Take care, Bill Werre

==========================================

>

>

> Date: 2002/07/22 Mon AM 06:56:02 CDT> To: shydrager >

> Subject: RE: MSA is the SAME as Shy-Drager Syndrome

>

> Hi , We wanted to change the name 2 years ago when this group moved from

> the Vanderbilt server but I think someone else had a group already set up

> called MSA. We had to settle for just putting on the subject line.

>

> Take care,

> Pam>

> Re: MSA is the SAME as Shy-Drager Syndrome

>

>

> Pam>

> Would it be useful to change the group's name to reflect this?

>

> Best wishes

> Cannon

>

>

> Pam Bower wrote:

> >

> > For those who are new or who haven't read this yet I want to make sure you

> > know... because I'm still getting people writing me who don't realize

> this.

> >

> > Multiple System Atrophy is the NEW name for Shy-Drager Syndrome (SDS). It

> > is also the NEW name for Striatonigral Degeneration(SND). In fact it

> isn't

> > even that new. It was 1969 when Drs. Graham and Oppenheimer realized that

> > Shy-Drager Syndrome, Striatonigral Degeneration and some cases of

> > non-hereditary Olivopontocerebellar atrophy(OPCA) were actually ONE

> DISEASE.

> > They knew this because they observed something in common in autopsies on

> the

> > brains of people who had been diagnosed with these three disorders which

> > before that time were thought to be separate diseases. They decided to

> come

> > up with a new name for this disease... Multiple System Atrophy. This name

> > has held up over time and is now the accepted terminology recommended by

> the

> > Consensus Committee on Multiple System Atrophy.

> >

> > >From http://www.emedicine.com/NEURO/topic354.htm :

> > " In 1969, Graham and Oppenheimer coined the term multiple system atrophy

> > (MSA) to combine the common features seen in the 3 manifestations. The

> > " consensus statement on the diagnosis of multiple system atrophy " in 1999

> > recommended the use of MSA-P to replace SND, and MSA-C for sporadic OPCA.

> > The consensus group also concluded that the term Shy-Drager syndrome is no

> > longer useful. They described the clinical features of the disease and set

> > the criteria for the diagnosis of possible, probable, and definite MSA "

> >

> > See also http://www.emedicine.com/neuro/topic671.htm

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

[Guest guest]

Hallo Pam

In that case, would it not be useful to change the name of the group to

MultipleSystemsAtrophy? Then it doesn't become confused with one of the

many other MSAs (I've looked at yahoo groups!), and it highlights that

Shy-Drager is no longer the agreed term for this condition. It might

also make the group easier to find for people who know it as Multiple

Systems Atrophy rather than Shy-Drager.

Best wishes

Pam Bower wrote:

>

> Hi , We wanted to change the name 2 years ago when this group moved from

> the Vanderbilt server but I think someone else had a group already set up

> called MSA. We had to settle for just putting on the subject line.

>

> Take care,

> Pam

>

> Re: MSA is the SAME as Shy-Drager Syndrome

>

> Pam

>

> Would it be useful to change the group's name to reflect this?

>

> Best wishes

> Cannon

>

> Pam Bower wrote:

> >

> > For those who are new or who haven't read this yet I want to make sure you

> > know... because I'm still getting people writing me who don't realize

> this.

> >

> > Multiple System Atrophy is the NEW name for Shy-Drager Syndrome (SDS). It

> > is also the NEW name for Striatonigral Degeneration(SND). In fact it

> isn't

> > even that new. It was 1969 when Drs. Graham and Oppenheimer realized that

> > Shy-Drager Syndrome, Striatonigral Degeneration and some cases of

> > non-hereditary Olivopontocerebellar atrophy(OPCA) were actually ONE

> DISEASE.

> > They knew this because they observed something in common in autopsies on

> the

> > brains of people who had been diagnosed with these three disorders which

> > before that time were thought to be separate diseases. They decided to

> come

> > up with a new name for this disease... Multiple System Atrophy. This name

> > has held up over time and is now the accepted terminology recommended by

> the

> > Consensus Committee on Multiple System Atrophy.

> >

> > >From http://www.emedicine.com/NEURO/topic354.htm :

> > " In 1969, Graham and Oppenheimer coined the term multiple system atrophy

> > (MSA) to combine the common features seen in the 3 manifestations. The

> > " consensus statement on the diagnosis of multiple system atrophy " in 1999

> > recommended the use of MSA-P to replace SND, and MSA-C for sporadic OPCA.

> > The consensus group also concluded that the term Shy-Drager syndrome is no

> > longer useful. They described the clinical features of the disease and set

> > the criteria for the diagnosis of possible, probable, and definite MSA "

> >

> > See also http://www.emedicine.com/neuro/topic671.htm

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

[Guest guest]

,

In addition to that problem, many doctors still call it Shy-Drager, so we are

sort of stuck. The list was started before it became MSA also - so there is

also tradition involved. I have also heard people say that they like Shy-Drager

better, because multiple systems atrophy sounds worse. Maybe we should call it

Oops!

Calling it SDS and MSA does seem to make it more visible. When it was called

plain old SDS list, it took me 3 years to find it and we had about 100 people,

now we have have 700 people.

Take care, Bill Werre

PS Charlotte had little SDS symptoms

>

>

> Date: 2002/07/22 Mon AM 09:26:57 CDT

> To: shydrager

> Subject: Re: MSA is the SAME as Shy-Drager Syndrome

>

> Hallo Pam

>

> In that case, would it not be useful to change the name of the group to

> MultipleSystemsAtrophy? Then it doesn't become confused with one of the

> many other MSAs (I've looked at yahoo groups!), and it highlights that

> Shy-Drager is no longer the agreed term for this condition. It might

> also make the group easier to find for people who know it as Multiple

> Systems Atrophy rather than Shy-Drager.

>

> Best wishes

>

>

> Pam Bower wrote:

> >

> > Hi , We wanted to change the name 2 years ago when this group moved from

> > the Vanderbilt server but I think someone else had a group already set up

> > called MSA. We had to settle for just putting on the subject line.

> >

> > Take care,

> > Pam

> >

> > Re: MSA is the SAME as Shy-Drager Syndrome

> >

> > Pam

> >

> > Would it be useful to change the group's name to reflect this?

> >

> > Best wishes

> > Cannon

> >

> > Pam Bower wrote:

> > >

> > > For those who are new or who haven't read this yet I want to make sure you

> > > know... because I'm still getting people writing me who don't realize

> > this.

> > >

> > > Multiple System Atrophy is the NEW name for Shy-Drager Syndrome (SDS). It

> > > is also the NEW name for Striatonigral Degeneration(SND). In fact it

> > isn't

> > > even that new. It was 1969 when Drs. Graham and Oppenheimer realized that

> > > Shy-Drager Syndrome, Striatonigral Degeneration and some cases of

> > > non-hereditary Olivopontocerebellar atrophy(OPCA) were actually ONE

> > DISEASE.

> > > They knew this because they observed something in common in autopsies on

> > the

> > > brains of people who had been diagnosed with these three disorders which

> > > before that time were thought to be separate diseases. They decided to

> > come

> > > up with a new name for this disease... Multiple System Atrophy. This name

> > > has held up over time and is now the accepted terminology recommended by

> > the

> > > Consensus Committee on Multiple System Atrophy.

> > >

> > > >From http://www.emedicine.com/NEURO/topic354.htm :

> > > " In 1969, Graham and Oppenheimer coined the term multiple system atrophy

> > > (MSA) to combine the common features seen in the 3 manifestations. The

> > > " consensus statement on the diagnosis of multiple system atrophy " in 1999

> > > recommended the use of MSA-P to replace SND, and MSA-C for sporadic OPCA.

> > > The consensus group also concluded that the term Shy-Drager syndrome is no

> > > longer useful. They described the clinical features of the disease and set

> > > the criteria for the diagnosis of possible, probable, and definite MSA "

> > >

> > > See also http://www.emedicine.com/neuro/topic671.htm

> > >

> > > If you do not wish to belong to shydrager, you may

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe

> > >

> > >

> > >

> > >

[Guest guest]

, I'd vote to change it in an instant, unfortunately that's not my call.

I lobbied to change it two years ago. Vanderbilt set up this list and are

still the list owners.

Hugs,

Pam

Re: MSA is the SAME as Shy-Drager Syndrome

> >

> > Pam

> >

> > Would it be useful to change the group's name to reflect this?

> >

> > Best wishes

> > Cannon

> >

> > Pam Bower wrote:

> > >

> > > For those who are new or who haven't read this yet I want to make sure

you

> > > know... because I'm still getting people writing me who don't realize

> > this.

> > >

> > > Multiple System Atrophy is the NEW name for Shy-Drager Syndrome (SDS).

It

> > > is also the NEW name for Striatonigral Degeneration(SND). In fact it

> > isn't

> > > even that new. It was 1969 when Drs. Graham and Oppenheimer realized

that

> > > Shy-Drager Syndrome, Striatonigral Degeneration and some cases of

> > > non-hereditary Olivopontocerebellar atrophy(OPCA) were actually ONE

> > DISEASE.

> > > They knew this because they observed something in common in autopsies

on

> > the

> > > brains of people who had been diagnosed with these three disorders

which

> > > before that time were thought to be separate diseases. They decided

to

> > come

> > > up with a new name for this disease... Multiple System Atrophy. This

name

> > > has held up over time and is now the accepted terminology recommended

by

> > the

> > > Consensus Committee on Multiple System Atrophy.

> > >

> > > >From http://www.emedicine.com/NEURO/topic354.htm :

> > > " In 1969, Graham and Oppenheimer coined the term multiple system

atrophy

> > > (MSA) to combine the common features seen in the 3 manifestations. The

> > > " consensus statement on the diagnosis of multiple system atrophy " in

1999

> > > recommended the use of MSA-P to replace SND, and MSA-C for sporadic

OPCA.

> > > The consensus group also concluded that the term Shy-Drager syndrome

is no

> > > longer useful. They described the clinical features of the disease and

set

> > > the criteria for the diagnosis of possible, probable, and definite

MSA "

> > >

> > > See also http://www.emedicine.com/neuro/topic671.htm

> > >

> > > If you do not wish to belong to shydrager, you may

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe

> > >

> > >

> > >

> > >

[Guest guest]

I agree with .....it would be useful to change the name of the group to MultipleSystemsAtrophy. Also having it spelled out makes a greater impression and takes it out of the category of just another "alphabet" syndrome. EVer since I became aware that the name of my condition was MSA and not SD, I have thought that it was rather useless to keep the name Shy-Drager out there. If the name S-D were graduaally phased out then MSA or Multiple System Atrophy would become the accepted usage.

barbara pond

blacksburg va

[Guest guest]

Pam,

Would a write-in campaign to Vanderbilt influence them in any way to consider a name change?

barbara pond

blacksburg va

[Guest guest]

I agree with Barbara's comments, even though I may not know the full discussion behind her message, especially the spelling out of the name.

Marilyn in TN

From: Bvpond44@...

Reply-To: shydrager

Date: Tue, 23 Jul 2002 21:17:58 EDT

To: shydrager

Subject: Re: MSA is the SAME as Shy-Drager Syndrome

I agree with .....it would be useful to change the name of the group to MultipleSystemsAtrophy. Also having it spelled out makes a greater impression and takes it out of the category of just another " alphabet " syndrome. EVer since I became aware that the name of my condition was MSA and not SD, I have thought that it was rather useless to keep the name Shy-Drager out there. If the name S-D were graduaally phased out then MSA or Multiple System Atrophy would become the accepted usage.

barbara pond

blacksburg va

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe