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Re: Digest Number 1535

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In a message dated 6/18/00 12:56:44 AM Eastern Daylight Time,

MiniGastricBypass (AT) e writes:

> The surgeon said I was a little arrogant, telling the group to look at my

> results and to confirm them for themselves if they were skeptical. He

> thought is was just right given how they were speaking to me. I can be a

> little abrupt at times. I was very sure of myself because our results are

> so much better than anyone else.

Dr. R ANYONE who is a leader in their field can't help but be a little

arrogant. ly, it made me feel MORE confident. I knew that you would do

EVERYTHING possible to have me have a good outcome, and that you expected a

good outcome. Remember, you just planted the seed, everyone who does

something differently has experienced what you have experienced. Besides,

(except for the possible exception of MY peers, lawyers) IS there a more

arrogant group than surgeons? You hang in there. We know that your results

speak for themselves.

As for the internet, THANK GOD we have the ability to educate ourselves,

communicate with you and other patients on the internet! I still remember

contacting a lady that a friend THOUGHT you had operated on. When I asked

her what surgery she had had, she had NO IDEA!!! Spent several weeks in the

hosptial and went home for MONTHS to recover.

Thank you for your sweet, compassionate, arrogant self! You have given us

our life back! If I sound like a groupie, well that's what happens when you

get another chance at life.

Happy Father's Day, dear man!

Safe journey,

MGB 03 MAY 00

Safely on the other side!!!!

Dr. Rutledge clos.net

Self-funded company plan administered by Interactive Medical

Denied on appeal as an excluded benefit

Self Pay

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In a message dated 6/18/00 12:56:44 AM Eastern Daylight Time,

MiniGastricBypass (AT) e writes:

> The surgeon said I was a little arrogant, telling the group to look at my

> results and to confirm them for themselves if they were skeptical. He

> thought is was just right given how they were speaking to me. I can be a

> little abrupt at times. I was very sure of myself because our results are

> so much better than anyone else.

Dr. R ANYONE who is a leader in their field can't help but be a little

arrogant. ly, it made me feel MORE confident. I knew that you would do

EVERYTHING possible to have me have a good outcome, and that you expected a

good outcome. Remember, you just planted the seed, everyone who does

something differently has experienced what you have experienced. Besides,

(except for the possible exception of MY peers, lawyers) IS there a more

arrogant group than surgeons? You hang in there. We know that your results

speak for themselves.

As for the internet, THANK GOD we have the ability to educate ourselves,

communicate with you and other patients on the internet! I still remember

contacting a lady that a friend THOUGHT you had operated on. When I asked

her what surgery she had had, she had NO IDEA!!! Spent several weeks in the

hosptial and went home for MONTHS to recover.

Thank you for your sweet, compassionate, arrogant self! You have given us

our life back! If I sound like a groupie, well that's what happens when you

get another chance at life.

Happy Father's Day, dear man!

Safe journey,

MGB 03 MAY 00

Safely on the other side!!!!

Dr. Rutledge clos.net

Self-funded company plan administered by Interactive Medical

Denied on appeal as an excluded benefit

Self Pay

Link to comment
Share on other sites

Guest guest

In a message dated 6/18/00 12:56:44 AM Eastern Daylight Time,

MiniGastricBypass (AT) e writes:

> The surgeon said I was a little arrogant, telling the group to look at my

> results and to confirm them for themselves if they were skeptical. He

> thought is was just right given how they were speaking to me. I can be a

> little abrupt at times. I was very sure of myself because our results are

> so much better than anyone else.

Dr. R ANYONE who is a leader in their field can't help but be a little

arrogant. ly, it made me feel MORE confident. I knew that you would do

EVERYTHING possible to have me have a good outcome, and that you expected a

good outcome. Remember, you just planted the seed, everyone who does

something differently has experienced what you have experienced. Besides,

(except for the possible exception of MY peers, lawyers) IS there a more

arrogant group than surgeons? You hang in there. We know that your results

speak for themselves.

As for the internet, THANK GOD we have the ability to educate ourselves,

communicate with you and other patients on the internet! I still remember

contacting a lady that a friend THOUGHT you had operated on. When I asked

her what surgery she had had, she had NO IDEA!!! Spent several weeks in the

hosptial and went home for MONTHS to recover.

Thank you for your sweet, compassionate, arrogant self! You have given us

our life back! If I sound like a groupie, well that's what happens when you

get another chance at life.

Happy Father's Day, dear man!

Safe journey,

MGB 03 MAY 00

Safely on the other side!!!!

Dr. Rutledge clos.net

Self-funded company plan administered by Interactive Medical

Denied on appeal as an excluded benefit

Self Pay

Link to comment
Share on other sites

Guest guest

To Dr. R.:

I'm still pre-op and working on the requirements, but I wanted to add my vote

of confidence and support.

About 6 years ago, I began researching the different kinds of bariatric

surgery. The thought had never cross my mind before, until a coworker had it

done. He was well over 600 lbs. I'm not sure exactly which procedure he

had, but I know that within 30 minutes of eating, everything that had gone in

one hole (mouth) came out the other end!

I contacted a surgeon in Boston for mine. I went thru all the required

counseling ... psychological, nutritional and others. I went thru numerous

physical tests. And essentially learned as much as I could about it. By the

time I was " ready " for the surgery, I changed my mind! The procedure he was

using required 30 days in the hospital (!), and you were on liquids only for

another 3 months after that, and " solids " super blended, were introduced only

after the 4th month. His " pouch " was only 2 ounces! And the " dumping

syndrome " was extremely high for just about all the patients. I just could

not subject myself to that!

I still had a 6 year old with severe Attention Deficit Hyperactivy Disorder

at home. There was no way I could be " sick " that long. My family would have

disowned me!

Now I am extremely happy that my daughter-in-law found you, and that I did

not have it done then!

A neighbor of ours had one done about 20 years ago ... she did lose weight,

but no where near what she had expected. And ever since the surgery she has

lived going from one specialist to another! She has more medical problems

now, than 's has " little liver pills " (if you are old enough, you'll

remember that one! LOL!). I know she never recommended it to anyone else

after! Since your results are obviously miles better, I know that I will be

much happier than she was. And I can't wait to lose the weight and then show

up where I used to work and show off! I'm so glad that I won't have to go

through what these 2 people went and are still, going through!

Don't give up the fight ... a prophet is never accepted in his own land!

Trudy

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Guest guest

To Dr. R.:

I'm still pre-op and working on the requirements, but I wanted to add my vote

of confidence and support.

About 6 years ago, I began researching the different kinds of bariatric

surgery. The thought had never cross my mind before, until a coworker had it

done. He was well over 600 lbs. I'm not sure exactly which procedure he

had, but I know that within 30 minutes of eating, everything that had gone in

one hole (mouth) came out the other end!

I contacted a surgeon in Boston for mine. I went thru all the required

counseling ... psychological, nutritional and others. I went thru numerous

physical tests. And essentially learned as much as I could about it. By the

time I was " ready " for the surgery, I changed my mind! The procedure he was

using required 30 days in the hospital (!), and you were on liquids only for

another 3 months after that, and " solids " super blended, were introduced only

after the 4th month. His " pouch " was only 2 ounces! And the " dumping

syndrome " was extremely high for just about all the patients. I just could

not subject myself to that!

I still had a 6 year old with severe Attention Deficit Hyperactivy Disorder

at home. There was no way I could be " sick " that long. My family would have

disowned me!

Now I am extremely happy that my daughter-in-law found you, and that I did

not have it done then!

A neighbor of ours had one done about 20 years ago ... she did lose weight,

but no where near what she had expected. And ever since the surgery she has

lived going from one specialist to another! She has more medical problems

now, than 's has " little liver pills " (if you are old enough, you'll

remember that one! LOL!). I know she never recommended it to anyone else

after! Since your results are obviously miles better, I know that I will be

much happier than she was. And I can't wait to lose the weight and then show

up where I used to work and show off! I'm so glad that I won't have to go

through what these 2 people went and are still, going through!

Don't give up the fight ... a prophet is never accepted in his own land!

Trudy

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Guest guest

To Dr. R.:

I'm still pre-op and working on the requirements, but I wanted to add my vote

of confidence and support.

About 6 years ago, I began researching the different kinds of bariatric

surgery. The thought had never cross my mind before, until a coworker had it

done. He was well over 600 lbs. I'm not sure exactly which procedure he

had, but I know that within 30 minutes of eating, everything that had gone in

one hole (mouth) came out the other end!

I contacted a surgeon in Boston for mine. I went thru all the required

counseling ... psychological, nutritional and others. I went thru numerous

physical tests. And essentially learned as much as I could about it. By the

time I was " ready " for the surgery, I changed my mind! The procedure he was

using required 30 days in the hospital (!), and you were on liquids only for

another 3 months after that, and " solids " super blended, were introduced only

after the 4th month. His " pouch " was only 2 ounces! And the " dumping

syndrome " was extremely high for just about all the patients. I just could

not subject myself to that!

I still had a 6 year old with severe Attention Deficit Hyperactivy Disorder

at home. There was no way I could be " sick " that long. My family would have

disowned me!

Now I am extremely happy that my daughter-in-law found you, and that I did

not have it done then!

A neighbor of ours had one done about 20 years ago ... she did lose weight,

but no where near what she had expected. And ever since the surgery she has

lived going from one specialist to another! She has more medical problems

now, than 's has " little liver pills " (if you are old enough, you'll

remember that one! LOL!). I know she never recommended it to anyone else

after! Since your results are obviously miles better, I know that I will be

much happier than she was. And I can't wait to lose the weight and then show

up where I used to work and show off! I'm so glad that I won't have to go

through what these 2 people went and are still, going through!

Don't give up the fight ... a prophet is never accepted in his own land!

Trudy

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  • 1 year later...
Guest guest

We have a link to a database of neurologists on the homepage of

PSPInformation.com. I imagine Charlotte may be an attractive destination

from Clinton SC. It does have a large medical community. My experience

(which was with PSP) was that after the diagnosis was made - the interest of

our neurologist was noticibly less than intense. In fact our doctor said

quite early that there was really nothing of any real value he could do.

Office visits consisted of him taking notes and asking us questions about

what we had learned. Eventually we found that a general internal medicine

doctor best served our ongoing needs. I'm in Charlotte - if I can help

please get in touch.

Ron Ritch

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Guest guest

Sadly I noticed too, that while everyone

thought I had MS the interest in my well-being seemed higher. Lost

causes I suppose.

At 6/5/02 04:35 PM Wednesday, you

wrote:

We have a link to a database of

neurologists on the homepage of

PSPInformation.com. I imagine Charlotte may be an attractive

destination

from Clinton SC. It does have a large medical community. My

experience

(which was with PSP) was that after the diagnosis was made - the interest

of

our neurologist was noticibly less than intense. In fact our doctor

said

quite early that there was really nothing of any real value he could

do.

Office visits consisted of him taking notes and asking us questions

about

what we had learned. Eventually we found that a general internal

medicine

doctor best served our ongoing needs. I'm in Charlotte - if I can

help

please get in touch.

Ron Ritch

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

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Guest guest

Hi Ron,

I am in Indian Trail, my dad died one month ago with a diagnosis of

shydragers, but I had a spinal to see if I had ms, but it was negative, but

because of the lesion and symptoms they still want me to do the avonex

injections, because even though the spinal was negative they want to treat me

for three years. I asked about shydragers being hereditary and they said no.

I see neurologist at Mecklenburg Neurology across from Presbyterian

Hospital. There is another person on this site from Charlotte and her name

is Deborah aka Tenacitywins. What exactly is your diagnosis.

Dee/NC

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Guest guest

Ron,

Did your father have confirmed diagnosis by autopsy? If not, others on the

list will tell you that some of the hereditary neurological conditions (such

as OPCA and the Ataxias) cannot be distinguished conclusively from

MSA/Shydrager except by autopsy.

Since it sounds as though you are having neurological symptoms that cause

you to wonder if you could also have what your father had, have you had any

testing for the hereditary ataxias, etc.

Regards,

Jerry Cash

Re: Digest Number 1535

Hi Ron,

I am in Indian Trail, my dad died one month ago with a diagnosis of

shydragers, but I had a spinal to see if I had ms, but it was negative, but

because of the lesion and symptoms they still want me to do the avonex

injections, because even though the spinal was negative they want to treat

me

for three years. I asked about shydragers being hereditary and they said

no.

I see neurologist at Mecklenburg Neurology across from Presbyterian

Hospital. There is another person on this site from Charlotte and her name

is Deborah aka Tenacitywins. What exactly is your diagnosis.

Dee/NC

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

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Guest guest

Dear Jerry,

I noticed you included OPCA as being hereditary. My husband was diagnosed

with OPCA conclusively by Dr. Sid Gilman. He said, however, that is was not

hereditary. Just wondering where you got your information. We were told

genetic testing was not recommended. I'm wondering because I have 2

children.

>

>Reply-To: shydrager

>To: " shydrager shydrager >

>Subject: RE: Digest Number 1535

>Date: Thu, 6 Jun 2002 10:28:51 -0500

>

>Ron,

>

>Did your father have confirmed diagnosis by autopsy? If not, others on the

>list will tell you that some of the hereditary neurological conditions

>(such

>as OPCA and the Ataxias) cannot be distinguished conclusively from

>MSA/Shydrager except by autopsy.

>

>Since it sounds as though you are having neurological symptoms that cause

>you to wonder if you could also have what your father had, have you had any

>testing for the hereditary ataxias, etc.

>

>Regards,

>

>Jerry Cash

>

> Re: Digest Number 1535

>

>

>Hi Ron,

>I am in Indian Trail, my dad died one month ago with a diagnosis of

>shydragers, but I had a spinal to see if I had ms, but it was negative, but

>because of the lesion and symptoms they still want me to do the avonex

>injections, because even though the spinal was negative they want to treat

>me

>for three years. I asked about shydragers being hereditary and they said

>no.

> I see neurologist at Mecklenburg Neurology across from Presbyterian

>Hospital. There is another person on this site from Charlotte and her name

>is Deborah aka Tenacitywins. What exactly is your diagnosis.

>Dee/NC

>

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

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

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Guest guest

If you look back in the archives at some of the information Pam and others

have posted previously I think it has been explained that there are two

types of OPCA - hereditary and sporadic. However, maybe some of the others

on the list will want to clarify since I believe Pam is currently away on

business.

But, basically, yes it is my understanding that some OPCAs are heredity

while others are sporadic and that some of the sporadic OPCA (which is

apparently what your husband has) can progess to become MSA (which of course

is thought to be exclusively sporadic or non-hereditary).

I'm certainly not the expert on the list to be answering with much

authority, but I assume one of the key criteria in evaluating heredity vs.

sporadic OPCA is family history. If there are no relatives (parents,

grandparents, etc.) then it is almost a given that the condition was not

inherited and must have developed as a sporadic condition.

Didn't mean to confuse anything, hope this helps to clarify,

Jerry

Re: Digest Number 1535

>

>

>Hi Ron,

>I am in Indian Trail, my dad died one month ago with a diagnosis of

>shydragers, but I had a spinal to see if I had ms, but it was negative, but

>because of the lesion and symptoms they still want me to do the avonex

>injections, because even though the spinal was negative they want to treat

>me

>for three years. I asked about shydragers being hereditary and they said

>no.

> I see neurologist at Mecklenburg Neurology across from Presbyterian

>Hospital. There is another person on this site from Charlotte and her name

>is Deborah aka Tenacitywins. What exactly is your diagnosis.

>Dee/NC

>

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

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

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Guest guest

on's,

Note OPCA can be hereditary, BUT the sporatic version (no previous family

members had it) is considered MSA. My wife had sporatic OPCA, therefore it was

MSA. If your husband had an autopsy and they determined that it was indeed

sporatic OPCA, there is no need for genetic testing.

Take care, Bill Werre

------------------

The on's wrote:

> Dear Jerry,

>

> I noticed you included OPCA as being hereditary. My husband was diagnosed

> with OPCA conclusively by Dr. Sid Gilman. He said, however, that is was not

> hereditary. Just wondering where you got your information. We were told

> genetic testing was not recommended. I'm wondering because I have 2

> children.

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Guest guest

on's,

Note OPCA can be hereditary, BUT the sporatic version (no previous family

members had it) is considered MSA. My wife had sporatic OPCA, therefore it was

MSA. If your husband had an autopsy and they determined that it was indeed

sporatic OPCA, there is no need for genetic testing.

Take care, Bill Werre

------------------

The on's wrote:

> Dear Jerry,

>

> I noticed you included OPCA as being hereditary. My husband was diagnosed

> with OPCA conclusively by Dr. Sid Gilman. He said, however, that is was not

> hereditary. Just wondering where you got your information. We were told

> genetic testing was not recommended. I'm wondering because I have 2

> children.

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Guest guest

on's,

Note OPCA can be hereditary, BUT the sporatic version (no previous family

members had it) is considered MSA. My wife had sporatic OPCA, therefore it was

MSA. If your husband had an autopsy and they determined that it was indeed

sporatic OPCA, there is no need for genetic testing.

Take care, Bill Werre

------------------

The on's wrote:

> Dear Jerry,

>

> I noticed you included OPCA as being hereditary. My husband was diagnosed

> with OPCA conclusively by Dr. Sid Gilman. He said, however, that is was not

> hereditary. Just wondering where you got your information. We were told

> genetic testing was not recommended. I'm wondering because I have 2

> children.

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Guest guest

Bill,

Thanks for the clarification to the ons. Just a note of further

clarification though, it is my understanding from what we've learned on this

list that sporadic OPCA does not necessarily progress to MSA even though we

often speak of MSA of the OPCA variety. Sporadic OPCA (which has not

progressed to MSA of the OPCA variety) has a much different life expectancy

(which is typically I believe around 20 years post diagnosis) and a slower

rate of progression of symptoms than MSA of any variety. Do you agree?

Regards,

jerry Cash

Re: Digest Number 1535

on's,

Note OPCA can be hereditary, BUT the sporatic version (no previous family

members had it) is considered MSA. My wife had sporatic OPCA, therefore it

was

MSA. If your husband had an autopsy and they determined that it was indeed

sporatic OPCA, there is no need for genetic testing.

Take care, Bill Werre

------------------

The on's wrote:

> Dear Jerry,

>

> I noticed you included OPCA as being hereditary. My husband was

diagnosed

> with OPCA conclusively by Dr. Sid Gilman. He said, however, that is was

not

> hereditary. Just wondering where you got your information. We were told

> genetic testing was not recommended. I'm wondering because I have 2

> children.

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

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Guest guest

Bill,

Thanks for the clarification to the ons. Just a note of further

clarification though, it is my understanding from what we've learned on this

list that sporadic OPCA does not necessarily progress to MSA even though we

often speak of MSA of the OPCA variety. Sporadic OPCA (which has not

progressed to MSA of the OPCA variety) has a much different life expectancy

(which is typically I believe around 20 years post diagnosis) and a slower

rate of progression of symptoms than MSA of any variety. Do you agree?

Regards,

jerry Cash

Re: Digest Number 1535

on's,

Note OPCA can be hereditary, BUT the sporatic version (no previous family

members had it) is considered MSA. My wife had sporatic OPCA, therefore it

was

MSA. If your husband had an autopsy and they determined that it was indeed

sporatic OPCA, there is no need for genetic testing.

Take care, Bill Werre

------------------

The on's wrote:

> Dear Jerry,

>

> I noticed you included OPCA as being hereditary. My husband was

diagnosed

> with OPCA conclusively by Dr. Sid Gilman. He said, however, that is was

not

> hereditary. Just wondering where you got your information. We were told

> genetic testing was not recommended. I'm wondering because I have 2

> children.

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

Link to comment
Share on other sites

Guest guest

Bill,

Thanks for the clarification to the ons. Just a note of further

clarification though, it is my understanding from what we've learned on this

list that sporadic OPCA does not necessarily progress to MSA even though we

often speak of MSA of the OPCA variety. Sporadic OPCA (which has not

progressed to MSA of the OPCA variety) has a much different life expectancy

(which is typically I believe around 20 years post diagnosis) and a slower

rate of progression of symptoms than MSA of any variety. Do you agree?

Regards,

jerry Cash

Re: Digest Number 1535

on's,

Note OPCA can be hereditary, BUT the sporatic version (no previous family

members had it) is considered MSA. My wife had sporatic OPCA, therefore it

was

MSA. If your husband had an autopsy and they determined that it was indeed

sporatic OPCA, there is no need for genetic testing.

Take care, Bill Werre

------------------

The on's wrote:

> Dear Jerry,

>

> I noticed you included OPCA as being hereditary. My husband was

diagnosed

> with OPCA conclusively by Dr. Sid Gilman. He said, however, that is was

not

> hereditary. Just wondering where you got your information. We were told

> genetic testing was not recommended. I'm wondering because I have 2

> children.

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

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