Re: RESEARCH: MSA Study Group information

[Guest guest]

HELLO,I WENT TO SEE DR.CHESIRE THE OTHER DAY AND HE WAS VERY SHORT WITH ME,AFTER ALL THIS TIME I HAVE BEEN TRYING TO FIND AN ANSWER FOR ALL OF THIS,AND ALL HE TOLD ME WAS THAT I HAD A CEREBELLAR DEGENERATION AND I ASK HIM WHAT DOES THAT MEAN,AND HE REALLY DIDN,T SAY MUCH AT ALL.I ASK HIM WHY AM I HAVING ALL OF THESE DIFFERENT PROBLEMS,LIKE SHAKING,GOING BLIND,MY WALKING AND PLUS WHEN THEY SAID THAT MY PLUMARY TEST SHOW SO MUSCLE WEAKNESS,HE SAID THAT HE DIDN,T KNOW MUCH ABOUT THAT,HE DIDN,T EVEN MAKE ME A FOLLOW UP APPOINTMENT.DOES THIS MEAN THAT I DON,T NEED TO SEE A NEROGISTS ANY MORE OR WHAT.WHAT SHOULD I EXPECT FOR ALL OF THIS.I FEEL THAT MY PROBALY IS ALL IN MY HEAD..I AM JUST REALLY CONFUSED..IF YOU CAN PLEASE CONTACT ME AT 1- OR 1-..OR YOU CAN EMAIL ME THANK YOU JANICE HARRELL

Pam Bower wrote: Please explore all of the links at the European MSAStudy Group website. This is very valuableinformation on MSA research!See:http://www.emsa-sg.orgHere are a few direct links that I find interesting:List of European MSA Study Group (EMSA-SG)Participantshttp://www.emsa-sg.org/organisat/partner.htmClick on each name to see their qualifications.List of North American Study Group (NAMSA-SG)Participants http://www.emsa-sg.org/organisat/namsa.htmResearch Literaturehttp://www.emsa-sg.org/literature/literature.htmSummarizes some of the recent European research onMSA.Consensus diagnostic criteria for MSAhttp://www.emsa-sg.org/msa/diagnosis.htmDifferential diagnosis http://www.emsa-sg.org/msa/differential.htmTherapy for MSAhttp://www.emsa-sg.org/msa/therapy.htm______________________________________________________________________ Find, Connect, Date! http://personals.yahoo.caIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

HELLO,I WENT TO SEE DR.CHESIRE THE OTHER DAY AND HE WAS VERY SHORT WITH ME,AFTER ALL THIS TIME I HAVE BEEN TRYING TO FIND AN ANSWER FOR ALL OF THIS,AND ALL HE TOLD ME WAS THAT I HAD A CEREBELLAR DEGENERATION AND I ASK HIM WHAT DOES THAT MEAN,AND HE REALLY DIDN,T SAY MUCH AT ALL.I ASK HIM WHY AM I HAVING ALL OF THESE DIFFERENT PROBLEMS,LIKE SHAKING,GOING BLIND,MY WALKING AND PLUS WHEN THEY SAID THAT MY PLUMARY TEST SHOW SO MUSCLE WEAKNESS,HE SAID THAT HE DIDN,T KNOW MUCH ABOUT THAT,HE DIDN,T EVEN MAKE ME A FOLLOW UP APPOINTMENT.DOES THIS MEAN THAT I DON,T NEED TO SEE A NEROGISTS ANY MORE OR WHAT.WHAT SHOULD I EXPECT FOR ALL OF THIS.I FEEL THAT MY PROBALY IS ALL IN MY HEAD..I AM JUST REALLY CONFUSED..IF YOU CAN PLEASE CONTACT ME AT 1- OR 1-..OR YOU CAN EMAIL ME THANK YOU JANICE HARRELL

Pam Bower wrote: Please explore all of the links at the European MSAStudy Group website. This is very valuableinformation on MSA research!See:http://www.emsa-sg.orgHere are a few direct links that I find interesting:List of European MSA Study Group (EMSA-SG)Participantshttp://www.emsa-sg.org/organisat/partner.htmClick on each name to see their qualifications.List of North American Study Group (NAMSA-SG)Participants http://www.emsa-sg.org/organisat/namsa.htmResearch Literaturehttp://www.emsa-sg.org/literature/literature.htmSummarizes some of the recent European research onMSA.Consensus diagnostic criteria for MSAhttp://www.emsa-sg.org/msa/diagnosis.htmDifferential diagnosis http://www.emsa-sg.org/msa/differential.htmTherapy for MSAhttp://www.emsa-sg.org/msa/therapy.htm______________________________________________________________________ Find, Connect, Date! http://personals.yahoo.caIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

HELLO,I WENT TO SEE DR.CHESIRE THE OTHER DAY AND HE WAS VERY SHORT WITH ME,AFTER ALL THIS TIME I HAVE BEEN TRYING TO FIND AN ANSWER FOR ALL OF THIS,AND ALL HE TOLD ME WAS THAT I HAD A CEREBELLAR DEGENERATION AND I ASK HIM WHAT DOES THAT MEAN,AND HE REALLY DIDN,T SAY MUCH AT ALL.I ASK HIM WHY AM I HAVING ALL OF THESE DIFFERENT PROBLEMS,LIKE SHAKING,GOING BLIND,MY WALKING AND PLUS WHEN THEY SAID THAT MY PLUMARY TEST SHOW SO MUSCLE WEAKNESS,HE SAID THAT HE DIDN,T KNOW MUCH ABOUT THAT,HE DIDN,T EVEN MAKE ME A FOLLOW UP APPOINTMENT.DOES THIS MEAN THAT I DON,T NEED TO SEE A NEROGISTS ANY MORE OR WHAT.WHAT SHOULD I EXPECT FOR ALL OF THIS.I FEEL THAT MY PROBALY IS ALL IN MY HEAD..I AM JUST REALLY CONFUSED..IF YOU CAN PLEASE CONTACT ME AT 1- OR 1-..OR YOU CAN EMAIL ME THANK YOU JANICE HARRELL

Pam Bower wrote: Please explore all of the links at the European MSAStudy Group website. This is very valuableinformation on MSA research!See:http://www.emsa-sg.orgHere are a few direct links that I find interesting:List of European MSA Study Group (EMSA-SG)Participantshttp://www.emsa-sg.org/organisat/partner.htmClick on each name to see their qualifications.List of North American Study Group (NAMSA-SG)Participants http://www.emsa-sg.org/organisat/namsa.htmResearch Literaturehttp://www.emsa-sg.org/literature/literature.htmSummarizes some of the recent European research onMSA.Consensus diagnostic criteria for MSAhttp://www.emsa-sg.org/msa/diagnosis.htmDifferential diagnosis http://www.emsa-sg.org/msa/differential.htmTherapy for MSAhttp://www.emsa-sg.org/msa/therapy.htm______________________________________________________________________ Find, Connect, Date! http://personals.yahoo.caIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Janice,

MSA is one form of CEREBELLAR DEGENERATION. He may think it is too

early to tell more at this time. That is common. If yjay is all you

have, there is not a lot that they can do until you get more symptoms.

There are other forms of CEREBELLAR DEGENERATION. If you were referred

to him by another doctor, you want to go to the referring doctor to get

treated after he gets a report from this doctor.

Take care, Bill Werre

[Guest guest]

Janice,

MSA is one form of CEREBELLAR DEGENERATION. He may think it is too

early to tell more at this time. That is common. If yjay is all you

have, there is not a lot that they can do until you get more symptoms.

There are other forms of CEREBELLAR DEGENERATION. If you were referred

to him by another doctor, you want to go to the referring doctor to get

treated after he gets a report from this doctor.

Take care, Bill Werre

[Guest guest]

Janice,

MSA is one form of CEREBELLAR DEGENERATION. He may think it is too

early to tell more at this time. That is common. If yjay is all you

have, there is not a lot that they can do until you get more symptoms.

There are other forms of CEREBELLAR DEGENERATION. If you were referred

to him by another doctor, you want to go to the referring doctor to get

treated after he gets a report from this doctor.

Take care, Bill Werre

[Guest guest]

-Janice,

I am so sorry that you did not have a good visit with this

neurologist. I can not answer for this doctor or tell you what is

wrong with you. I do know that there are a lot of neurologist who do

not know about rare diseases therefore they will try to make it look

like you have psychiatric problems. I know this to be true because it

happened to me on more than one occasion and I am sure it has

happened to others in this group. I also know that it is very

disheartening to have this happen after having to wait for so long to

see a neurologist. It is too bad that we can't pile all of these

doctors up and show them exactly how it feels to be mistreated when

you are feeling so bad and being so scared of the bad things your

body is doing to you. The only thing that can be done is to report

these doctors to the medical board and/ or to let others know not to

make an appointment with them.(word of mouth)I believe that word of

mouth can be quite damaging as well. Janice, no matter what, do not

give up! You know the pain that you are in and you have to keep

trying to get the help you need. You might have MSA and you might not

but there is something wrong and you need to find out what it is. The

only other thing that I can tell you that has helped me is prayer. I

believe that I have found a doctor to help me. He is egotistical but

I think alot of them are. I don't care though as long as he helps me

like I believe he is. I have always said I don't care what I have

wrong as long as I know what it is I can handle it. I believe you

probably feel this way also. Please, remember we are here for you to

talk to when you need us.

God Bless,

Belinda

-- In shydrager@y..., janice harrell wrote:

>

> HELLO,I WENT TO SEE DR.CHESIRE THE OTHER DAY AND HE WAS VERY SHORT

WITH ME,AFTER ALL THIS TIME I HAVE BEEN TRYING TO FIND AN ANSWER FOR

ALL OF THIS,AND ALL HE TOLD ME WAS THAT I HAD A CEREBELLAR

DEGENERATION AND I ASK HIM WHAT DOES THAT MEAN,AND HE REALLY DIDN,T

SAY MUCH AT ALL.I ASK HIM WHY AM I HAVING ALL OF THESE DIFFERENT

PROBLEMS,LIKE SHAKING,GOING BLIND,MY WALKING AND PLUS WHEN THEY SAID

THAT MY PLUMARY TEST SHOW SO MUSCLE WEAKNESS,HE SAID THAT HE DIDN,T

KNOW MUCH ABOUT THAT,HE DIDN,T EVEN MAKE ME A FOLLOW UP

APPOINTMENT.DOES THIS MEAN THAT I DON,T NEED TO SEE A NEROGISTS ANY

MORE OR WHAT.WHAT SHOULD I EXPECT FOR ALL OF THIS.I FEEL THAT MY

PROBALY IS ALL IN MY HEAD..I AM JUST REALLY CONFUSED..IF YOU CAN

PLEASE CONTACT ME AT 1- OR 1-..OR YOU CAN

EMAIL ME THANK YOU JANICE HARRELL

> Pam Bower wrote: Please explore all of the links at

the European MSA

> Study Group website. This is very valuable

> information on MSA research!

>

> See:

> http://www.emsa-sg.org

>

>

> Here are a few direct links that I find interesting:

>

> List of European MSA Study Group (EMSA-SG)

> Participants

> http://www.emsa-sg.org/organisat/partner.htm

> Click on each name to see their qualifications.

>

> List of North American Study Group (NAMSA-SG)

> Participants

> http://www.emsa-sg.org/organisat/namsa.htm

>

> Research Literature

> http://www.emsa-sg.org/literature/literature.htm

> Summarizes some of the recent European research on

> MSA.

>

> Consensus diagnostic criteria for MSA

> http://www.emsa-sg.org/msa/diagnosis.htm

>

> Differential diagnosis

> http://www.emsa-sg.org/msa/differential.htm

>

> Therapy for MSA

> http://www.emsa-sg.org/msa/therapy.htm

>

>

______________________________________________________________________

> Find, Connect, Date! http://personals.yahoo.ca

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe@y...

>

>

>

>

>

[Guest guest]

-Janice,

I am so sorry that you did not have a good visit with this

neurologist. I can not answer for this doctor or tell you what is

wrong with you. I do know that there are a lot of neurologist who do

not know about rare diseases therefore they will try to make it look

like you have psychiatric problems. I know this to be true because it

happened to me on more than one occasion and I am sure it has

happened to others in this group. I also know that it is very

disheartening to have this happen after having to wait for so long to

see a neurologist. It is too bad that we can't pile all of these

doctors up and show them exactly how it feels to be mistreated when

you are feeling so bad and being so scared of the bad things your

body is doing to you. The only thing that can be done is to report

these doctors to the medical board and/ or to let others know not to

make an appointment with them.(word of mouth)I believe that word of

mouth can be quite damaging as well. Janice, no matter what, do not

give up! You know the pain that you are in and you have to keep

trying to get the help you need. You might have MSA and you might not

but there is something wrong and you need to find out what it is. The

only other thing that I can tell you that has helped me is prayer. I

believe that I have found a doctor to help me. He is egotistical but

I think alot of them are. I don't care though as long as he helps me

like I believe he is. I have always said I don't care what I have

wrong as long as I know what it is I can handle it. I believe you

probably feel this way also. Please, remember we are here for you to

talk to when you need us.

God Bless,

Belinda

-- In shydrager@y..., janice harrell wrote:

>

> HELLO,I WENT TO SEE DR.CHESIRE THE OTHER DAY AND HE WAS VERY SHORT

WITH ME,AFTER ALL THIS TIME I HAVE BEEN TRYING TO FIND AN ANSWER FOR

ALL OF THIS,AND ALL HE TOLD ME WAS THAT I HAD A CEREBELLAR

DEGENERATION AND I ASK HIM WHAT DOES THAT MEAN,AND HE REALLY DIDN,T

SAY MUCH AT ALL.I ASK HIM WHY AM I HAVING ALL OF THESE DIFFERENT

PROBLEMS,LIKE SHAKING,GOING BLIND,MY WALKING AND PLUS WHEN THEY SAID

THAT MY PLUMARY TEST SHOW SO MUSCLE WEAKNESS,HE SAID THAT HE DIDN,T

KNOW MUCH ABOUT THAT,HE DIDN,T EVEN MAKE ME A FOLLOW UP

APPOINTMENT.DOES THIS MEAN THAT I DON,T NEED TO SEE A NEROGISTS ANY

MORE OR WHAT.WHAT SHOULD I EXPECT FOR ALL OF THIS.I FEEL THAT MY

PROBALY IS ALL IN MY HEAD..I AM JUST REALLY CONFUSED..IF YOU CAN

PLEASE CONTACT ME AT 1- OR 1-..OR YOU CAN

EMAIL ME THANK YOU JANICE HARRELL

> Pam Bower wrote: Please explore all of the links at

the European MSA

> Study Group website. This is very valuable

> information on MSA research!

>

> See:

> http://www.emsa-sg.org

>

>

> Here are a few direct links that I find interesting:

>

> List of European MSA Study Group (EMSA-SG)

> Participants

> http://www.emsa-sg.org/organisat/partner.htm

> Click on each name to see their qualifications.

>

> List of North American Study Group (NAMSA-SG)

> Participants

> http://www.emsa-sg.org/organisat/namsa.htm

>

> Research Literature

> http://www.emsa-sg.org/literature/literature.htm

> Summarizes some of the recent European research on

> MSA.

>

> Consensus diagnostic criteria for MSA

> http://www.emsa-sg.org/msa/diagnosis.htm

>

> Differential diagnosis

> http://www.emsa-sg.org/msa/differential.htm

>

> Therapy for MSA

> http://www.emsa-sg.org/msa/therapy.htm

>

>

______________________________________________________________________

> Find, Connect, Date! http://personals.yahoo.ca

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe@y...

>

>

>

>

>

[Guest guest]

-Janice,

I am so sorry that you did not have a good visit with this

neurologist. I can not answer for this doctor or tell you what is

wrong with you. I do know that there are a lot of neurologist who do

not know about rare diseases therefore they will try to make it look

like you have psychiatric problems. I know this to be true because it

happened to me on more than one occasion and I am sure it has

happened to others in this group. I also know that it is very

disheartening to have this happen after having to wait for so long to

see a neurologist. It is too bad that we can't pile all of these

doctors up and show them exactly how it feels to be mistreated when

you are feeling so bad and being so scared of the bad things your

body is doing to you. The only thing that can be done is to report

these doctors to the medical board and/ or to let others know not to

make an appointment with them.(word of mouth)I believe that word of

mouth can be quite damaging as well. Janice, no matter what, do not

give up! You know the pain that you are in and you have to keep

trying to get the help you need. You might have MSA and you might not

but there is something wrong and you need to find out what it is. The

only other thing that I can tell you that has helped me is prayer. I

believe that I have found a doctor to help me. He is egotistical but

I think alot of them are. I don't care though as long as he helps me

like I believe he is. I have always said I don't care what I have

wrong as long as I know what it is I can handle it. I believe you

probably feel this way also. Please, remember we are here for you to

talk to when you need us.

God Bless,

Belinda

-- In shydrager@y..., janice harrell wrote:

>

> HELLO,I WENT TO SEE DR.CHESIRE THE OTHER DAY AND HE WAS VERY SHORT

WITH ME,AFTER ALL THIS TIME I HAVE BEEN TRYING TO FIND AN ANSWER FOR

ALL OF THIS,AND ALL HE TOLD ME WAS THAT I HAD A CEREBELLAR

DEGENERATION AND I ASK HIM WHAT DOES THAT MEAN,AND HE REALLY DIDN,T

SAY MUCH AT ALL.I ASK HIM WHY AM I HAVING ALL OF THESE DIFFERENT

PROBLEMS,LIKE SHAKING,GOING BLIND,MY WALKING AND PLUS WHEN THEY SAID

THAT MY PLUMARY TEST SHOW SO MUSCLE WEAKNESS,HE SAID THAT HE DIDN,T

KNOW MUCH ABOUT THAT,HE DIDN,T EVEN MAKE ME A FOLLOW UP

APPOINTMENT.DOES THIS MEAN THAT I DON,T NEED TO SEE A NEROGISTS ANY

MORE OR WHAT.WHAT SHOULD I EXPECT FOR ALL OF THIS.I FEEL THAT MY

PROBALY IS ALL IN MY HEAD..I AM JUST REALLY CONFUSED..IF YOU CAN

PLEASE CONTACT ME AT 1- OR 1-..OR YOU CAN

EMAIL ME THANK YOU JANICE HARRELL

> Pam Bower wrote: Please explore all of the links at

the European MSA

> Study Group website. This is very valuable

> information on MSA research!

>

> See:

> http://www.emsa-sg.org

>

>

> Here are a few direct links that I find interesting:

>

> List of European MSA Study Group (EMSA-SG)

> Participants

> http://www.emsa-sg.org/organisat/partner.htm

> Click on each name to see their qualifications.

>

> List of North American Study Group (NAMSA-SG)

> Participants

> http://www.emsa-sg.org/organisat/namsa.htm

>

> Research Literature

> http://www.emsa-sg.org/literature/literature.htm

> Summarizes some of the recent European research on

> MSA.

>

> Consensus diagnostic criteria for MSA

> http://www.emsa-sg.org/msa/diagnosis.htm

>

> Differential diagnosis

> http://www.emsa-sg.org/msa/differential.htm

>

> Therapy for MSA

> http://www.emsa-sg.org/msa/therapy.htm

>

>

______________________________________________________________________

> Find, Connect, Date! http://personals.yahoo.ca

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe@y...

>

>

>

>

>

[Guest guest]

thank ya for getting back with me so quick.i just get

so aggravated,because i heard that this dr. could give

me an anawer.i had to go to my primary care dr

today,and in four days i gain 5 lbs. and she told me

to go to my cardialigst and let him know how bad that

i am swelling,but i didn,t want to go because all they

do is put me on more medicine,so i just told my

daughter that i was going to take just some laxis and

hope that that will take care of the problem,i am just

so tired of going to dr. because they just seem to

give you more meds..i even ask chesire why am i taking

simet,if i don,t need to,and he told me that i can

just stop taking it if i wanted to.but then i heard

from other people that you just shouldn,t stop taking

something all together,so what should i do ,i heard

that he was the best here in jax.fla...i wish that i

could find someone in jax.fla that has msa,and find

out what dr.that they go to but i can,t..i have

try..anyone knows please let me know....thank you

--- belnorest Belindastime@...> wrote:

> -Janice,

> I am so sorry that you did not have a good visit

> with this

> neurologist. I can not answer for this doctor or

> tell you what is

> wrong with you. I do know that there are a lot of

> neurologist who do

> not know about rare diseases therefore they will try

> to make it look

> like you have psychiatric problems. I know this to

> be true because it

> happened to me on more than one occasion and I am

> sure it has

> happened to others in this group. I also know that

> it is very

> disheartening to have this happen after having to

> wait for so long to

> see a neurologist. It is too bad that we can't pile

> all of these

> doctors up and show them exactly how it feels to be

> mistreated when

> you are feeling so bad and being so scared of the

> bad things your

> body is doing to you. The only thing that can be

> done is to report

> these doctors to the medical board and/ or to let

> others know not to

> make an appointment with them.(word of mouth)I

> believe that word of

> mouth can be quite damaging as well. Janice, no

> matter what, do not

> give up! You know the pain that you are in and you

> have to keep

> trying to get the help you need. You might have MSA

> and you might not

> but there is something wrong and you need to find

> out what it is. The

> only other thing that I can tell you that has helped

> me is prayer. I

> believe that I have found a doctor to help me. He is

> egotistical but

> I think alot of them are. I don't care though as

> long as he helps me

> like I believe he is. I have always said I don't

> care what I have

> wrong as long as I know what it is I can handle it.

> I believe you

> probably feel this way also. Please, remember we are

> here for you to

> talk to when you need us.

> God Bless,

> Belinda

>

> -- In shydrager@y..., janice harrell

> wrote:

> >

> > HELLO,I WENT TO SEE DR.CHESIRE THE OTHER DAY AND

> HE WAS VERY SHORT

> WITH ME,AFTER ALL THIS TIME I HAVE BEEN TRYING TO

> FIND AN ANSWER FOR

> ALL OF THIS,AND ALL HE TOLD ME WAS THAT I HAD A

> CEREBELLAR

> DEGENERATION AND I ASK HIM WHAT DOES THAT MEAN,AND

> HE REALLY DIDN,T

> SAY MUCH AT ALL.I ASK HIM WHY AM I HAVING ALL OF

> THESE DIFFERENT

> PROBLEMS,LIKE SHAKING,GOING BLIND,MY WALKING AND

> PLUS WHEN THEY SAID

> THAT MY PLUMARY TEST SHOW SO MUSCLE WEAKNESS,HE SAID

> THAT HE DIDN,T

> KNOW MUCH ABOUT THAT,HE DIDN,T EVEN MAKE ME A FOLLOW

> UP

> APPOINTMENT.DOES THIS MEAN THAT I DON,T NEED TO SEE

> A NEROGISTS ANY

> MORE OR WHAT.WHAT SHOULD I EXPECT FOR ALL OF THIS.I

> FEEL THAT MY

> PROBALY IS ALL IN MY HEAD..I AM JUST REALLY

> CONFUSED..IF YOU CAN

> PLEASE CONTACT ME AT 1- OR

> 1-..OR YOU CAN

> EMAIL ME THANK YOU JANICE HARRELL

> > Pam Bower wrote: Please explore

> all of the links at

> the European MSA

> > Study Group website. This is very valuable

> > information on MSA research!

> >

> > See:

> > http://www.emsa-sg.org

> >

> >

> > Here are a few direct links that I find

> interesting:

> >

> > List of European MSA Study Group (EMSA-SG)

> > Participants

> > http://www.emsa-sg.org/organisat/partner.htm

> > Click on each name to see their qualifications.

> >

> > List of North American Study Group (NAMSA-SG)

> > Participants

> > http://www.emsa-sg.org/organisat/namsa.htm

> >

> > Research Literature

> > http://www.emsa-sg.org/literature/literature.htm

> > Summarizes some of the recent European research on

> > MSA.

> >

> > Consensus diagnostic criteria for MSA

> > http://www.emsa-sg.org/msa/diagnosis.htm

> >

> > Differential diagnosis

> > http://www.emsa-sg.org/msa/differential.htm

> >

> > Therapy for MSA

> > http://www.emsa-sg.org/msa/therapy.htm

> >

> >

>

______________________________________________________________________

>

> > Find, Connect, Date! http://personals.yahoo.ca

> >

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

>

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

thank ya for getting back with me so quick.i just get

so aggravated,because i heard that this dr. could give

me an anawer.i had to go to my primary care dr

today,and in four days i gain 5 lbs. and she told me

to go to my cardialigst and let him know how bad that

i am swelling,but i didn,t want to go because all they

do is put me on more medicine,so i just told my

daughter that i was going to take just some laxis and

hope that that will take care of the problem,i am just

so tired of going to dr. because they just seem to

give you more meds..i even ask chesire why am i taking

simet,if i don,t need to,and he told me that i can

just stop taking it if i wanted to.but then i heard

from other people that you just shouldn,t stop taking

something all together,so what should i do ,i heard

that he was the best here in jax.fla...i wish that i

could find someone in jax.fla that has msa,and find

out what dr.that they go to but i can,t..i have

try..anyone knows please let me know....thank you

--- belnorest Belindastime@...> wrote:

> -Janice,

> I am so sorry that you did not have a good visit

> with this

> neurologist. I can not answer for this doctor or

> tell you what is

> wrong with you. I do know that there are a lot of

> neurologist who do

> not know about rare diseases therefore they will try

> to make it look

> like you have psychiatric problems. I know this to

> be true because it

> happened to me on more than one occasion and I am

> sure it has

> happened to others in this group. I also know that

> it is very

> disheartening to have this happen after having to

> wait for so long to

> see a neurologist. It is too bad that we can't pile

> all of these

> doctors up and show them exactly how it feels to be

> mistreated when

> you are feeling so bad and being so scared of the

> bad things your

> body is doing to you. The only thing that can be

> done is to report

> these doctors to the medical board and/ or to let

> others know not to

> make an appointment with them.(word of mouth)I

> believe that word of

> mouth can be quite damaging as well. Janice, no

> matter what, do not

> give up! You know the pain that you are in and you

> have to keep

> trying to get the help you need. You might have MSA

> and you might not

> but there is something wrong and you need to find

> out what it is. The

> only other thing that I can tell you that has helped

> me is prayer. I

> believe that I have found a doctor to help me. He is

> egotistical but

> I think alot of them are. I don't care though as

> long as he helps me

> like I believe he is. I have always said I don't

> care what I have

> wrong as long as I know what it is I can handle it.

> I believe you

> probably feel this way also. Please, remember we are

> here for you to

> talk to when you need us.

> God Bless,

> Belinda

>

> -- In shydrager@y..., janice harrell

> wrote:

> >

> > HELLO,I WENT TO SEE DR.CHESIRE THE OTHER DAY AND

> HE WAS VERY SHORT

> WITH ME,AFTER ALL THIS TIME I HAVE BEEN TRYING TO

> FIND AN ANSWER FOR

> ALL OF THIS,AND ALL HE TOLD ME WAS THAT I HAD A

> CEREBELLAR

> DEGENERATION AND I ASK HIM WHAT DOES THAT MEAN,AND

> HE REALLY DIDN,T

> SAY MUCH AT ALL.I ASK HIM WHY AM I HAVING ALL OF

> THESE DIFFERENT

> PROBLEMS,LIKE SHAKING,GOING BLIND,MY WALKING AND

> PLUS WHEN THEY SAID

> THAT MY PLUMARY TEST SHOW SO MUSCLE WEAKNESS,HE SAID

> THAT HE DIDN,T

> KNOW MUCH ABOUT THAT,HE DIDN,T EVEN MAKE ME A FOLLOW

> UP

> APPOINTMENT.DOES THIS MEAN THAT I DON,T NEED TO SEE

> A NEROGISTS ANY

> MORE OR WHAT.WHAT SHOULD I EXPECT FOR ALL OF THIS.I

> FEEL THAT MY

> PROBALY IS ALL IN MY HEAD..I AM JUST REALLY

> CONFUSED..IF YOU CAN

> PLEASE CONTACT ME AT 1- OR

> 1-..OR YOU CAN

> EMAIL ME THANK YOU JANICE HARRELL

> > Pam Bower wrote: Please explore

> all of the links at

> the European MSA

> > Study Group website. This is very valuable

> > information on MSA research!

> >

> > See:

> > http://www.emsa-sg.org

> >

> >

> > Here are a few direct links that I find

> interesting:

> >

> > List of European MSA Study Group (EMSA-SG)

> > Participants

> > http://www.emsa-sg.org/organisat/partner.htm

> > Click on each name to see their qualifications.

> >

> > List of North American Study Group (NAMSA-SG)

> > Participants

> > http://www.emsa-sg.org/organisat/namsa.htm

> >

> > Research Literature

> > http://www.emsa-sg.org/literature/literature.htm

> > Summarizes some of the recent European research on

> > MSA.

> >

> > Consensus diagnostic criteria for MSA

> > http://www.emsa-sg.org/msa/diagnosis.htm

> >

> > Differential diagnosis

> > http://www.emsa-sg.org/msa/differential.htm

> >

> > Therapy for MSA

> > http://www.emsa-sg.org/msa/therapy.htm

> >

> >

>

______________________________________________________________________

>

> > Find, Connect, Date! http://personals.yahoo.ca

> >

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

>

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

Janice,

The Mayo Clinic is in ville, Florida isn't it? I have heard

that they can help you there. Have you been there? I am in Georgia

and dont know doctors there. I don't know if the doctor that you saw

works at the Mayo or not.

God bless and trying to help,

Belinda

Please explore

> > all of the links at

> > the European MSA

> > > Study Group website. This is very valuable

> > > information on MSA research!

> > >

> > > See:

> > > http://www.emsa-sg.org

> > >

> > >

> > > Here are a few direct links that I find

> > interesting:

> > >

> > > List of European MSA Study Group (EMSA-SG)

> > > Participants

> > > http://www.emsa-sg.org/organisat/partner.htm

> > > Click on each name to see their qualifications.

> > >

> > > List of North American Study Group (NAMSA-SG)

> > > Participants

> > > http://www.emsa-sg.org/organisat/namsa.htm

> > >

> > > Research Literature

> > > http://www.emsa-sg.org/literature/literature.htm

> > > Summarizes some of the recent European research on

> > > MSA.

> > >

> > > Consensus diagnostic criteria for MSA

> > > http://www.emsa-sg.org/msa/diagnosis.htm

> > >

> > > Differential diagnosis

> > > http://www.emsa-sg.org/msa/differential.htm

> > >

> > > Therapy for MSA

> > > http://www.emsa-sg.org/msa/therapy.htm

> > >

> > >

> >

>

______________________________________________________________________

> >

> > > Find, Connect, Date! http://personals.yahoo.ca

> > >

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

> >

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe@y...

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Janice,

The Mayo Clinic is in ville, Florida isn't it? I have heard

that they can help you there. Have you been there? I am in Georgia

and dont know doctors there. I don't know if the doctor that you saw

works at the Mayo or not.

God bless and trying to help,

Belinda

Please explore

> > all of the links at

> > the European MSA

> > > Study Group website. This is very valuable

> > > information on MSA research!

> > >

> > > See:

> > > http://www.emsa-sg.org

> > >

> > >

> > > Here are a few direct links that I find

> > interesting:

> > >

> > > List of European MSA Study Group (EMSA-SG)

> > > Participants

> > > http://www.emsa-sg.org/organisat/partner.htm

> > > Click on each name to see their qualifications.

> > >

> > > List of North American Study Group (NAMSA-SG)

> > > Participants

> > > http://www.emsa-sg.org/organisat/namsa.htm

> > >

> > > Research Literature

> > > http://www.emsa-sg.org/literature/literature.htm

> > > Summarizes some of the recent European research on

> > > MSA.

> > >

> > > Consensus diagnostic criteria for MSA

> > > http://www.emsa-sg.org/msa/diagnosis.htm

> > >

> > > Differential diagnosis

> > > http://www.emsa-sg.org/msa/differential.htm

> > >

> > > Therapy for MSA

> > > http://www.emsa-sg.org/msa/therapy.htm

> > >

> > >

> >

>

______________________________________________________________________

> >

> > > Find, Connect, Date! http://personals.yahoo.ca

> > >

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

> >

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe@y...

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Janice,

The Mayo Clinic is in ville, Florida isn't it? I have heard

that they can help you there. Have you been there? I am in Georgia

and dont know doctors there. I don't know if the doctor that you saw

works at the Mayo or not.

God bless and trying to help,

Belinda

Please explore

> > all of the links at

> > the European MSA

> > > Study Group website. This is very valuable

> > > information on MSA research!

> > >

> > > See:

> > > http://www.emsa-sg.org

> > >

> > >

> > > Here are a few direct links that I find

> > interesting:

> > >

> > > List of European MSA Study Group (EMSA-SG)

> > > Participants

> > > http://www.emsa-sg.org/organisat/partner.htm

> > > Click on each name to see their qualifications.

> > >

> > > List of North American Study Group (NAMSA-SG)

> > > Participants

> > > http://www.emsa-sg.org/organisat/namsa.htm

> > >

> > > Research Literature

> > > http://www.emsa-sg.org/literature/literature.htm

> > > Summarizes some of the recent European research on

> > > MSA.

> > >

> > > Consensus diagnostic criteria for MSA

> > > http://www.emsa-sg.org/msa/diagnosis.htm

> > >

> > > Differential diagnosis

> > > http://www.emsa-sg.org/msa/differential.htm

> > >

> > > Therapy for MSA

> > > http://www.emsa-sg.org/msa/therapy.htm

> > >

> > >

> >

>

______________________________________________________________________

> >

> > > Find, Connect, Date! http://personals.yahoo.ca

> > >

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

> >

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe@y...

> > >

> > >

> > >

> > >

> > >

[Guest guest]

yes the dr. that i saw was at the mayo clinic,his name

was dr. chesire, and i not saying that he was bad it

just he didn,t give me a good answer like i hope that

he would. and he didn,t even give me an follow up

appointment.i felt like that there was no use in going

there and i know that when i get the bill it is going

to be bad.but i went to him because i heard that he

was the best.he just told me that i had cerebellar

degeneration and i ask him what was causing my other

problems and he said that he didn,t know.so i feel

like i am back to square one again,so now what?

--- belnorest Belindastime@...> wrote:

> Janice,

> The Mayo Clinic is in ville, Florida isn't

> it? I have heard

> that they can help you there. Have you been there? I

> am in Georgia

> and dont know doctors there. I don't know if the

> doctor that you saw

> works at the Mayo or not.

> God bless and trying to help,

> Belinda

>

>

> Please

> explore

> > > all of the links at

> > > the European MSA

> > > > Study Group website. This is very valuable

> > > > information on MSA research!

> > > >

> > > > See:

> > > > http://www.emsa-sg.org

> > > >

> > > >

> > > > Here are a few direct links that I find

> > > interesting:

> > > >

> > > > List of European MSA Study Group (EMSA-SG)

> > > > Participants

> > > > http://www.emsa-sg.org/organisat/partner.htm

> > > > Click on each name to see their

> qualifications.

> > > >

> > > > List of North American Study Group (NAMSA-SG)

> > > > Participants

> > > > http://www.emsa-sg.org/organisat/namsa.htm

> > > >

> > > > Research Literature

> > > >

> http://www.emsa-sg.org/literature/literature.htm

> > > > Summarizes some of the recent European

> research on

> > > > MSA.

> > > >

> > > > Consensus diagnostic criteria for MSA

> > > > http://www.emsa-sg.org/msa/diagnosis.htm

> > > >

> > > > Differential diagnosis

> > > > http://www.emsa-sg.org/msa/differential.htm

> > > >

> > > > Therapy for MSA

> > > > http://www.emsa-sg.org/msa/therapy.htm

> > > >

> > > >

> > >

> >

>

______________________________________________________________________

> > >

> > > > Find, Connect, Date! http://personals.yahoo.ca

> > > >

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

> may

>

=== message truncated ===

__________________________________________________

[Guest guest]

yes the dr. that i saw was at the mayo clinic,his name

was dr. chesire, and i not saying that he was bad it

just he didn,t give me a good answer like i hope that

he would. and he didn,t even give me an follow up

appointment.i felt like that there was no use in going

there and i know that when i get the bill it is going

to be bad.but i went to him because i heard that he

was the best.he just told me that i had cerebellar

degeneration and i ask him what was causing my other

problems and he said that he didn,t know.so i feel

like i am back to square one again,so now what?

--- belnorest Belindastime@...> wrote:

> Janice,

> The Mayo Clinic is in ville, Florida isn't

> it? I have heard

> that they can help you there. Have you been there? I

> am in Georgia

> and dont know doctors there. I don't know if the

> doctor that you saw

> works at the Mayo or not.

> God bless and trying to help,

> Belinda

>

>

> Please

> explore

> > > all of the links at

> > > the European MSA

> > > > Study Group website. This is very valuable

> > > > information on MSA research!

> > > >

> > > > See:

> > > > http://www.emsa-sg.org

> > > >

> > > >

> > > > Here are a few direct links that I find

> > > interesting:

> > > >

> > > > List of European MSA Study Group (EMSA-SG)

> > > > Participants

> > > > http://www.emsa-sg.org/organisat/partner.htm

> > > > Click on each name to see their

> qualifications.

> > > >

> > > > List of North American Study Group (NAMSA-SG)

> > > > Participants

> > > > http://www.emsa-sg.org/organisat/namsa.htm

> > > >

> > > > Research Literature

> > > >

> http://www.emsa-sg.org/literature/literature.htm

> > > > Summarizes some of the recent European

> research on

> > > > MSA.

> > > >

> > > > Consensus diagnostic criteria for MSA

> > > > http://www.emsa-sg.org/msa/diagnosis.htm

> > > >

> > > > Differential diagnosis

> > > > http://www.emsa-sg.org/msa/differential.htm

> > > >

> > > > Therapy for MSA

> > > > http://www.emsa-sg.org/msa/therapy.htm

> > > >

> > > >

> > >

> >

>

______________________________________________________________________

> > >

> > > > Find, Connect, Date! http://personals.yahoo.ca

> > > >

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

> may

>

=== message truncated ===

__________________________________________________

[Guest guest]

yes the dr. that i saw was at the mayo clinic,his name

was dr. chesire, and i not saying that he was bad it

just he didn,t give me a good answer like i hope that

he would. and he didn,t even give me an follow up

appointment.i felt like that there was no use in going

there and i know that when i get the bill it is going

to be bad.but i went to him because i heard that he

was the best.he just told me that i had cerebellar

degeneration and i ask him what was causing my other

problems and he said that he didn,t know.so i feel

like i am back to square one again,so now what?

--- belnorest Belindastime@...> wrote:

> Janice,

> The Mayo Clinic is in ville, Florida isn't

> it? I have heard

> that they can help you there. Have you been there? I

> am in Georgia

> and dont know doctors there. I don't know if the

> doctor that you saw

> works at the Mayo or not.

> God bless and trying to help,

> Belinda

>

>

> Please

> explore

> > > all of the links at

> > > the European MSA

> > > > Study Group website. This is very valuable

> > > > information on MSA research!

> > > >

> > > > See:

> > > > http://www.emsa-sg.org

> > > >

> > > >

> > > > Here are a few direct links that I find

> > > interesting:

> > > >

> > > > List of European MSA Study Group (EMSA-SG)

> > > > Participants

> > > > http://www.emsa-sg.org/organisat/partner.htm

> > > > Click on each name to see their

> qualifications.

> > > >

> > > > List of North American Study Group (NAMSA-SG)

> > > > Participants

> > > > http://www.emsa-sg.org/organisat/namsa.htm

> > > >

> > > > Research Literature

> > > >

> http://www.emsa-sg.org/literature/literature.htm

> > > > Summarizes some of the recent European

> research on

> > > > MSA.

> > > >

> > > > Consensus diagnostic criteria for MSA

> > > > http://www.emsa-sg.org/msa/diagnosis.htm

> > > >

> > > > Differential diagnosis

> > > > http://www.emsa-sg.org/msa/differential.htm

> > > >

> > > > Therapy for MSA

> > > > http://www.emsa-sg.org/msa/therapy.htm

> > > >

> > > >

> > >

> >

>

______________________________________________________________________

> > >

> > > > Find, Connect, Date! http://personals.yahoo.ca

> > > >

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

> may

>

=== message truncated ===

__________________________________________________

[Guest guest]

Janice,

I do not think you are going to get a definite answer to what you

have like most have said. The only way they can be definite about it

is to do an autopsy. Quite honestly, I do not believe you are ready

for that yet any more than I am. They can only treat your symptoms.

As far as I can see you will have to be happy with that until

something changes. There might be a test to say what you positively

have in our life time but right now its not like they can say yes you

have the flu and in 2 weeks you are going to get over it. Stay with

your regular doctor and let them help your symptoms. We have to be

thankful that they can help the symptoms. Something else that helps

is try to keep as much stress out of you life as you possibly can.

God Bless,

Belinda

Please

> > explore

> > > > all of the links at

> > > > the European MSA

> > > > > Study Group website. This is very valuable

> > > > > information on MSA research!

> > > > >

> > > > > See:

> > > > > http://www.emsa-sg.org

> > > > >

> > > > >

> > > > > Here are a few direct links that I find

> > > > interesting:

> > > > >

> > > > > List of European MSA Study Group (EMSA-SG)

> > > > > Participants

> > > > > http://www.emsa-sg.org/organisat/partner.htm

> > > > > Click on each name to see their

> > qualifications.

> > > > >

> > > > > List of North American Study Group (NAMSA-SG)

> > > > > Participants

> > > > > http://www.emsa-sg.org/organisat/namsa.htm

> > > > >

> > > > > Research Literature

> > > > >

> > http://www.emsa-sg.org/literature/literature.htm

> > > > > Summarizes some of the recent European

> > research on

> > > > > MSA.

> > > > >

> > > > > Consensus diagnostic criteria for MSA

> > > > > http://www.emsa-sg.org/msa/diagnosis.htm

> > > > >

> > > > > Differential diagnosis

> > > > > http://www.emsa-sg.org/msa/differential.htm

> > > > >

> > > > > Therapy for MSA

> > > > > http://www.emsa-sg.org/msa/therapy.htm

> > > > >

> > > > >

> > > >

> > >

> >

>

______________________________________________________________________

> > > >

> > > > > Find, Connect, Date! http://personals.yahoo.ca

> > > > >

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

> > may

> >

> === message truncated ===

>

>

> __________________________________________________

>

[Guest guest]

Greetings Janice!

I definitely concur with Bill on this. Bill notes that " He may think it is

too

early to tell more at this time. " That is the case with my diagnosis. Last

year my neurologist and I discussed my symptoms. He noted some of the

symptoms were consistent with MSA, but were not pronounced enough, nor

consistent enough to make a probable diagnosis. And since nothing in my

treatment would change, " PRIMARY CEREBELLAR DEGENERATION " works for me. All

that he can do in either case is to help me manage the symptoms. Nothing

else.

Regards,

=jbf=

B. Fisher