Re: AT LAST AN ANSWER FROM DR. B

[Guest guest]

another thought:

I, too, was accused of knowing too much and being on the internet too much

and being obsessed about " Chiari " but this was from a Neurologist,,,,, he

finally gave up and diagnosed me with MS....

( no, I don't have MS)

When I went to Dr. Batzdorf he was happy that I knew so much about my

condition and was able to understand what was happening and what it was he

was going to do...

My surgery was in April 98......

I have always given Dr. B. positive points....I am sorry she did not feel as

happy with her visit.

Diane, California

[Guest guest]

Hi,

I am sorry so many of you are having problems with Doctor's saying you know

too much. I was told by my nsg before I had my surgery to get on the

internet and find out what I could. Also a few months ago I printed out the

symptoms list and brought it with me to my pcp visit and he asked me if he

could keep that copy. I gave it to him.

My mom and I decided that the doctor's who don't want you on the internet

are afraid we will know more then they do. They feel the have to be

superior. I have also met a few of them too.

in Kansas

>From: dianedeb@...

>To: kimberlydg@..., chiariegroups

>Subject: Re: AT LAST AN ANSWER FROM DR. B

>Date: Thu, 2 Nov 2000 10:42:39 EST

>

>another thought:

>I, too, was accused of knowing too much and being on the internet too much

>and being obsessed about " Chiari " but this was from a Neurologist,,,,,

>he

>finally gave up and diagnosed me with MS....

> ( no, I don't have MS)

>When I went to Dr. Batzdorf he was happy that I knew so much about my

>condition and was able to understand what was happening and what it was he

>was going to do...

>My surgery was in April 98......

>I have always given Dr. B. positive points....I am sorry she did not feel

>as

>happy with her visit.

>Diane, California

>

>Help section: /help/

>

>NOTE: NCC refers to posts with No Chiari Content

>

>Unsubscribe Yourself: chiari-unsubscribeegroups

>

>WACMA Home: www.pressenter.com/~wacma

>

>WACMA List: www.eGroups.com/group/chiari

>

>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Hi everyone,

Did you get the same thing I did? The doctor wasn't sure of Page's

symptoms because of her extensive reading? What!!!!? I just thought

about this when I woke up. I thought, sure I'm going to go in there

fully loaded with all this information and I can't go wrong. Well, first

thing I thought was the doctors' already look at me as crazy so why

believe anything on the internet?

You know what Page, you can over come this. You give them what they

deserve. I've been going through this for 15 months and it's really

getting old when these doctors are questioning our ability to tell the

truth. I know all of us here at egroups will support you in any way. I

would take a medical report from the Missouri University of Medicine and

let your doctor read that. You can't get any clearer than that! If you

want it, I'll send it over.

God bless to all of you,

Kim

[Guest guest]

Yes, even the esteemed Dr Frim 'accused' me of being an 'internet'

guy...just for talking with you guys...

acm1 5mm, no surgery

and a bunch of other crap... =)

- Re: AT LAST AN ANSWER FROM DR. B

another thought:

I, too, was accused of knowing too much and being on the internet too much

and being obsessed about " Chiari " but this was from a Neurologist,,,,, he

finally gave up and diagnosed me with MS....

( no, I don't have MS)

[Guest guest]

I totally agree. I had taken in a list of typed out

symptoms of my own as well as a list from WACMA (I had

highlighted all the ones I have suffered from at least

once) and Dr. B. snatched them right up from me. He

wrote in his letter " <i> actually provided him with a

printed list of symptoms, numbering 41, and

significantly, also provided me with a check off list

which she had obtained form the World Arnold Chiari

Malformation Association. "

I could possibly be reading into this but it sounds

like he was surprised by that fact. Good Lord I

thought everyone would have done this. My quest for a

dx has been so long and tough that there is no way I

would have remembered all the freaky stuff happening

to me without writing it down. And yah I thought I was

losing my mind a couple of times before I actually

found the list from WACMA and at that time confirmed

some of the things were indeed caused by chiari.

For example swaying...I was sitting indianstyle in a

nuero's office early on and my body started moving on

it's own.My mom was there and I showed her...then the

neuro came in just in time to see it but acted like i

was from the planet Mars when he saw it.

Probably b/c it wasn't that pronounced and he had no

idea what something like that would be caused

from...and that was the first day it happened.

The response I got out of him even after mentioning

chiari was " does my family suffer from movement

disorders? " and that was the end of that. So I didn't

mention it again for months b/c i thought most doctors

would just think that was a ploy to get attention or

something..until I found the list from WACMA! THEN I

added it on to my personal list of symptoms.

So i am rambling now. It is helping to get more

reactionary thoughts written down so thanks everyone

for listening.

Page

--- Kissane wrote:

> Hi,

>

> I am sorry so many of you are having problems with

> Doctor's saying you know

> too much. I was told by my nsg before I had my

> surgery to get on the

> internet and find out what I could. Also a few

> months ago I printed out the

> symptoms list and brought it with me to my pcp visit

> and he asked me if he

> could keep that copy. I gave it to him.

>

> My mom and I decided that the doctor's who don't

> want you on the internet

> are afraid we will know more then they do. They

> feel the have to be

> superior. I have also met a few of them too.

>

> in Kansas

>

>

> >From: dianedeb@...

> >To: kimberlydg@..., chiariegroups

> >Subject: Re: AT LAST AN ANSWER FROM DR. B

> >Date: Thu, 2 Nov 2000 10:42:39 EST

> >

> >another thought:

> >I, too, was accused of knowing too much and being

> on the internet too much

> >and being obsessed about " Chiari " but this was

> from a Neurologist,,,,,

> >he

> >finally gave up and diagnosed me with MS....

> > ( no, I don't have MS)

> >When I went to Dr. Batzdorf he was happy that I

> knew so much about my

> >condition and was able to understand what was

> happening and what it was he

> >was going to do...

> >My surgery was in April 98......

> >I have always given Dr. B. positive points....I am

> sorry she did not feel

> >as

> >happy with her visit.

> >Diane, California

> >

> >Help section: /help/

> >

> >NOTE: NCC refers to posts with No Chiari Content

> >

> >Unsubscribe Yourself:

> chiari-unsubscribeegroups

> >

> >WACMA Home: www.pressenter.com/~wacma

> >

> >WACMA List: www.eGroups.com/group/chiari

> >

> >

>

>

_________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at

> http://www.hotmail.com.

>

> Share information about yourself, create your own

> public profile at

> http://profiles.msn.com.

>

>

> Help section: /help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> Unsubscribe Yourself: chiari-unsubscribeegroups

>

>

> WACMA Home: www.pressenter.com/~wacma

>

> WACMA List: www.eGroups.com/group/chiari

>

>

__________________________________________________

[Guest guest]

Kissane wrote:

> Hi,

>

> I am sorry so many of you are having problems with Doctor's saying you know

> too much. I was told by my nsg before I had my surgery to get on the

> internet and find out what I could. Also a few months ago I printed out the

> symptoms list and brought it with me to my pcp visit and he asked me if he

> could keep that copy. I gave it to him.

>

> My mom and I decided that the doctor's who don't want you on the internet

> are afraid we will know more then they do. They feel the have to be

> superior. I have also met a few of them too.

>

> in Kansas

>

> >From: dianedeb@...

> >To: kimberlydg@..., chiariegroups

> >Subject: Re: AT LAST AN ANSWER FROM DR. B

> >Date: Thu, 2 Nov 2000 10:42:39 EST

> >

> >another thought:

> >I, too, was accused of knowing too much and being on the internet too much

> >and being obsessed about " Chiari " but this was from a Neurologist,,,,,

> >he

> >finally gave up and diagnosed me with MS....

> > ( no, I don't have MS)

> >When I went to Dr. Batzdorf he was happy that I knew so much about my

> >condition and was able to understand what was happening and what it was he

> >was going to do...

> >My surgery was in April 98......

> >I have always given Dr. B. positive points....I am sorry she did not feel

> >as

> >happy with her visit.

> >Diane, California

> >

> >Help section: /help/

> >

> >NOTE: NCC refers to posts with No Chiari Content

> >

> >Unsubscribe Yourself: chiari-unsubscribeegroups

> >

> >WACMA Home: www.pressenter.com/~wacma

> >

> >WACMA List: www.eGroups.com/group/chiari

> >

> >

>

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

> Help section: /help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> Unsubscribe Yourself: chiari-unsubscribeegroups

>

> WACMA Home: www.pressenter.com/~wacma

>

> WACMA List: www.eGroups.com/group/chiari

Totally agree! Kim

[Guest guest]

Ledford wrote:

> Yes, even the esteemed Dr Frim 'accused' me of being an 'internet'

> guy...just for talking with you guys...

>

>

> acm1 5mm, no surgery

> and a bunch of other crap... =)

>

> - Re: AT LAST AN ANSWER FROM DR. B

>

> another thought:

> I, too, was accused of knowing too much and being on the internet too much

> and being obsessed about " Chiari " but this was from a Neurologist,,,,, he

> finally gave up and diagnosed me with MS....

> ( no, I don't have MS)

>

We have got to come up with a plan. Let me get some information together and if

possible we should all try to have one of those net conferences or chat. Either

way, we have to come up with ideas.

God bless you all,

Kim

>

>

[Guest guest]

I think that what Dr. B was saying was that he was concerned about whether

or not his patient was influenced by the lists of symptoms that she had

downloaded off the internet. This is actually a common problem but it is

made worse by the multitude of seemingly unrelated symptoms that those of us

with Chiari suffer from. I must admit that I am glad that I complained

about most of my symptoms to my PCP and NSG first otherwise I might be

asking myself if I picked up the symptoms from the list! I had seen the

lists on the internet but I typed up my own list to take to the doctors, Dr.

B. seemed to react very positively to this. So for the group maybe it would

be better to take your own list instead of printing one off the internet and

marking your symptoms.

Just a thought...

Don McNeil

Tucson, AZ

Re: AT LAST AN ANSWER FROM DR. B

> > >Date: Thu, 2 Nov 2000 10:42:39 EST

> > >

> > >another thought:

> > >I, too, was accused of knowing too much and being

> > on the internet too much

> > >and being obsessed about " Chiari " but this was

> > from a Neurologist,,,,,

> > >he

> > >finally gave up and diagnosed me with MS....

> > > ( no, I don't have MS)

> > >When I went to Dr. Batzdorf he was happy that I

> > knew so much about my

> > >condition and was able to understand what was

> > happening and what it was he

> > >was going to do...

> > >My surgery was in April 98......

> > >I have always given Dr. B. positive points....I am

> > sorry she did not feel

> > >as

> > >happy with her visit.

> > >Diane, California

> > >

> > >Help section: /help/

> > >

> > >NOTE: NCC refers to posts with No Chiari Content

> > >

> > >Unsubscribe Yourself:

> > chiari-unsubscribeegroups

> > >

> > >WACMA Home: www.pressenter.com/~wacma

> > >

> > >WACMA List: www.eGroups.com/group/chiari

> > >

> > >

> >

> >

> _________________________________________________________________________

> > Get Your Private, Free E-mail from MSN Hotmail at

> > http://www.hotmail.com.

> >

> > Share information about yourself, create your own

> > public profile at

> > http://profiles.msn.com.

> >

> >

> > Help section: /help/

> >

> > NOTE: NCC refers to posts with No Chiari Content

> >

> > Unsubscribe Yourself: chiari-unsubscribeegroups

> >

> >

> > WACMA Home: www.pressenter.com/~wacma

> >

> > WACMA List: www.eGroups.com/group/chiari

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Kim,

I don't believe that Dr. B meant to be insulting or suspicious of

Page's symptoms.

As many in the group will tell you, there is a proven RISK that your

symptoms can increase in intensity and/or number when you read so

much about this malady day in and day out.

I do know that many memebers have had to take " breaks " from the group

to sort out how they were really feeling, and to make sure they were

not " taking on " other's symptoms.

This is the main reason ya'll never hear from Rick. He does not want

to get into the mode.....as it is, I am non-chiarian (hmmmm.....would

that make me....normal? LOL), and find myself saying " oh, I have

that! " when I read posts.

I think I took the long way around here, but I think what Dr. B meant

was that sometimes when you read up alot on a certain condition, your

mind can " mimic " certain symptoms. There have even been studies that

show that medical students even have troubles with this kind of stuff.

I think Page focused on the important stuff........Dr. B believed

that decompression surgery would help her.

Best Wishes,

Wendi -- New Mexico

>

>

> Hi everyone,

>

> Did you get the same thing I did? The doctor wasn't sure of

Page's

> symptoms because of her extensive reading? What!!!!? I just thought

> about this when I woke up. I thought, sure I'm going to go in there

> fully loaded with all this information and I can't go wrong. Well,

first

> thing I thought was the doctors' already look at me as crazy so why

> believe anything on the internet?

> You know what Page, you can over come this. You give them what

they

> deserve. I've been going through this for 15 months and it's really

> getting old when these doctors are questioning our ability to tell

the

> truth. I know all of us here at egroups will support you in any

way. I

> would take a medical report from the Missouri University of

Medicine and

> let your doctor read that. You can't get any clearer than that! If

you

> want it, I'll send it over.

> God bless to all of you,

> Kim

[Guest guest]

How does one's mind mimic symptoms? I do believe this

is true but what's an example? I don't want to get too

tied up in the word mimic.

page

--- Otero wrote:

> Kim,

>

> I don't believe that Dr. B meant to be insulting or

> suspicious of

> Page's symptoms.

>

> As many in the group will tell you, there is a

> proven RISK that your

> symptoms can increase in intensity and/or number

> when you read so

> much about this malady day in and day out.

>

> I do know that many memebers have had to take

> " breaks " from the group

> to sort out how they were really feeling, and to

> make sure they were

> not " taking on " other's symptoms.

>

> This is the main reason ya'll never hear from Rick.

> He does not want

> to get into the mode.....as it is, I am non-chiarian

> (hmmmm.....would

> that make me....normal? LOL), and find myself

> saying " oh, I have

> that! " when I read posts.

>

> I think I took the long way around here, but I think

> what Dr. B meant

> was that sometimes when you read up alot on a

> certain condition, your

> mind can " mimic " certain symptoms. There have even

> been studies that

> show that medical students even have troubles with

> this kind of stuff.

>

> I think Page focused on the important

> stuff........Dr. B believed

> that decompression surgery would help her.

>

> Best Wishes,

> Wendi -- New Mexico

>

>

>

> >

> >

> > Hi everyone,

> >

> > Did you get the same thing I did? The doctor

> wasn't sure of

> Page's

> > symptoms because of her extensive reading?

> What!!!!? I just thought

> > about this when I woke up. I thought, sure I'm

> going to go in there

> > fully loaded with all this information and I can't

> go wrong. Well,

> first

> > thing I thought was the doctors' already look at

> me as crazy so why

> > believe anything on the internet?

> > You know what Page, you can over come this.

> You give them what

> they

> > deserve. I've been going through this for 15

> months and it's really

> > getting old when these doctors are questioning our

> ability to tell

> the

> > truth. I know all of us here at egroups will

> support you in any

> way. I

> > would take a medical report from the Missouri

> University of

> Medicine and

> > let your doctor read that. You can't get any

> clearer than that! If

> you

> > want it, I'll send it over.

> > God bless to all of you,

> > Kim

>

>

> Help section: /help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> Unsubscribe Yourself: chiari-unsubscribeegroups

>

>

> WACMA Home: www.pressenter.com/~wacma

>

> WACMA List: www.eGroups.com/group/chiari

>

>

> .

>

> WACMA Home: www.pressenter.com/~wacma

>

> WACMA List: www.eGroups.com/group/chiari

>

>

> .

>

__________________________________________________

[Guest guest]

It is not so much mimicking as fixating. For instance... Let's say that you

have a friend who is talking with you, and you tell them that one of the

frequent symptoms of ACM is headaches. That friend may then start fixating

on every headache that they get, and come to convince themselves that they

have a serious problem, when in fact, they are having a normal amount of

headaches.

At least, that is my take on it...

--

-sylvan

At 10:48 PM 11/3/00 -0800, Page wrote:

>How does one's mind mimic symptoms? I do believe this

>is true but what's an example? I don't want to get too

>tied up in the word mimic.

>

>

>page

>--- Otero wrote:

> > Kim,

> >

> > I don't believe that Dr. B meant to be insulting or

> > suspicious of

> > Page's symptoms.

> >

> > As many in the group will tell you, there is a

> > proven RISK that your

> > symptoms can increase in intensity and/or number

> > when you read so

> > much about this malady day in and day out.

> >

> > I do know that many memebers have had to take

> > " breaks " from the group

> > to sort out how they were really feeling, and to

> > make sure they were

> > not " taking on " other's symptoms.

> >

> > This is the main reason ya'll never hear from Rick.

> > He does not want

> > to get into the mode.....as it is, I am non-chiarian

> > (hmmmm.....would

> > that make me....normal? LOL), and find myself

> > saying " oh, I have

> > that! " when I read posts.

> >

> > I think I took the long way around here, but I think

> > what Dr. B meant

> > was that sometimes when you read up alot on a

> > certain condition, your

> > mind can " mimic " certain symptoms. There have even

> > been studies that

> > show that medical students even have troubles with

> > this kind of stuff.

> >

> > I think Page focused on the important

> > stuff........Dr. B believed

> > that decompression surgery would help her.

> >

> > Best Wishes,

> > Wendi -- New Mexico

> >

> >

> >

> > >

> > >

> > > Hi everyone,

> > >

> > > Did you get the same thing I did? The doctor

> > wasn't sure of

> > Page's

> > > symptoms because of her extensive reading?

> > What!!!!? I just thought

> > > about this when I woke up. I thought, sure I'm

> > going to go in there

> > > fully loaded with all this information and I can't

> > go wrong. Well,

> > first

> > > thing I thought was the doctors' already look at

> > me as crazy so why

> > > believe anything on the internet?

> > > You know what Page, you can over come this.

> > You give them what

> > they

> > > deserve. I've been going through this for 15

> > months and it's really

> > > getting old when these doctors are questioning our

> > ability to tell

> > the

> > > truth. I know all of us here at egroups will

> > support you in any

> > way. I

> > > would take a medical report from the Missouri

> > University of

> > Medicine and

> > > let your doctor read that. You can't get any

> > clearer than that! If

> > you

> > > want it, I'll send it over.

> > > God bless to all of you,

> > > Kim

> >

> >

> > Help section: /help/

> >

> > NOTE: NCC refers to posts with No Chiari Content

> >

> > Unsubscribe Yourself: chiari-unsubscribeegroups

> >

> >

> > WACMA Home: www.pressenter.com/~wacma

> >

> > WACMA List: www.eGroups.com/group/chiari

> >

> >

> > .

> >

> > WACMA Home: www.pressenter.com/~wacma

> >

> > WACMA List: www.eGroups.com/group/chiari

> >

> >

> > .

> >

>

>

>__________________________________________________

>