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Joyce, welcome

My name is Jeanie, I don't know what type of CMT I have, age 39 married 2

kids (no CMT w/kids). I live in Oregon, USA.

My CMT involves my legs, feet, and hands. I use arm crutches and a

wheelchair as needed. I wear one AFO.

Hope you enjoy the list..... Your new freind, Jeanie

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Joyce, welcome

My name is Jeanie, I don't know what type of CMT I have, age 39 married 2

kids (no CMT w/kids). I live in Oregon, USA.

My CMT involves my legs, feet, and hands. I use arm crutches and a

wheelchair as needed. I wear one AFO.

Hope you enjoy the list..... Your new freind, Jeanie

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HEY CLAUDIA,

THANKS SO MUCH FOR THE MESSAGE. I HAVE JUST BEEN DX

WITH RP THIS PAST WEEK.I'M A LITTLE SCARED AND I'M

TRYING TO FIND OUT AS MUCH AS POSSIBLE ABOUT THIS.

I'M ON HIGH DOSE OF PRED RIGHT NOW. I'VE HAD SEVERAL

BOUTS OF THIS BEFORE,BUT DID'NT KNOW WHAT IT

WAS.......

I TOO, AM 49 I HAVE 2 DAUGHTERS AND 2 STEP SONS. 8

GRANDCHILDREN BETWEEN US. SO AS YOU CAN TELL, I DON'T

HAVE TIME FOR ALL THIS MESS. PLEASE LET ME KNOW WHAT'S

UP WITH IT. I LIVE IN RALEIGH ,NC

THANKS,

DIANA

JOYNER,DIANA@... WORK E-MAIL

--- RCColloran@... wrote:

> I would like to welcome another new member.

> dianajoyner2000@....

>

> You have found a wonderful group. Sorry that you or

> someone you know needs

> us, but we are here for anything that you might

> need. Please feel free to

> ask all the questions that you want. We are all

> still learning, but there is

> a lot of knowledge in this group. We inform each

> other (so we can inform our

> drs.)LOL, vent, cry and LAUGH alot.

>

> Please feel free to jump right in. I live in Calif,

> am 49, married and have

> 3 daughters. Have been dx with RP for almost 3

> years.

>

> Again, welcome to the most wonderful group there is.

>

>

> hugs

> C

>

__________________________________________________

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Welcome ,

Sorry that you have RP, but you'll be happy you found this group. My

husband was dx 2 years ago and I have learned so much from the people here!

They are great ! Take care of yourself and that wonderful family.

B.

At 08:25 AM 3/27/2001 -0800, you wrote:

>HEY CLAUDIA,

>THANKS SO MUCH FOR THE MESSAGE. I HAVE JUST BEEN DX

>WITH RP THIS PAST WEEK.I'M A LITTLE SCARED AND I'M

>TRYING TO FIND OUT AS MUCH AS POSSIBLE ABOUT THIS.

>I'M ON HIGH DOSE OF PRED RIGHT NOW. I'VE HAD SEVERAL

>BOUTS OF THIS BEFORE,BUT DID'NT KNOW WHAT IT

>WAS.......

>

>I TOO, AM 49 I HAVE 2 DAUGHTERS AND 2 STEP SONS. 8

>GRANDCHILDREN BETWEEN US. SO AS YOU CAN TELL, I DON'T

>HAVE TIME FOR ALL THIS MESS. PLEASE LET ME KNOW WHAT'S

>UP WITH IT. I LIVE IN RALEIGH ,NC

>

>THANKS,

>DIANA

>

>JOYNER,DIANA@... WORK E-MAIL

>--- RCColloran@... wrote:

>> I would like to welcome another new member.

>> dianajoyner2000@....

>>

>> You have found a wonderful group. Sorry that you or

>> someone you know needs

>> us, but we are here for anything that you might

>> need. Please feel free to

>> ask all the questions that you want. We are all

>> still learning, but there is

>> a lot of knowledge in this group. We inform each

>> other (so we can inform our

>> drs.)LOL, vent, cry and LAUGH alot.

>>

>> Please feel free to jump right in. I live in Calif,

>> am 49, married and have

>> 3 daughters. Have been dx with RP for almost 3

>> years.

>>

>> Again, welcome to the most wonderful group there is.

>>

>>

>> hugs

>> C

>>

>

>

>__________________________________________________

>

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Hi J.,

Welcome to the RP. list. First off I want to say don't be frightened by what

you read about RP. Some of the info is very outdated.

Can you share with us how the RP. affects you.

Looking forward to your posts and getting to know you.

Hugs,

Sandy

> HEY CLAUDIA,

> THANKS SO MUCH FOR THE MESSAGE. I HAVE JUST BEEN DX

> WITH RP THIS PAST WEEK.I'M A LITTLE SCARED AND I'M

> TRYING TO FIND OUT AS MUCH AS POSSIBLE ABOUT THIS.

> I'M ON HIGH DOSE OF PRED RIGHT NOW. I'VE HAD SEVERAL

> BOUTS OF THIS BEFORE,BUT DID'NT KNOW WHAT IT

> WAS.......

>

> I TOO, AM 49 I HAVE 2 DAUGHTERS AND 2 STEP SONS. 8

> GRANDCHILDREN BETWEEN US. SO AS YOU CAN TELL, I DON'T

> HAVE TIME FOR ALL THIS MESS. PLEASE LET ME KNOW WHAT'S

> UP WITH IT. I LIVE IN RALEIGH ,NC

>

> THANKS,

> DIANA

>

> JOYNER,DIANA@... WORK E-MAIL

> --- RCColloran@... wrote:

> > I would like to welcome another new member.

> > dianajoyner2000@....

> >

> > You have found a wonderful group. Sorry that you or

> > someone you know needs

> > us, but we are here for anything that you might

> > need. Please feel free to

> > ask all the questions that you want. We are all

> > still learning, but there is

> > a lot of knowledge in this group. We inform each

> > other (so we can inform our

> > drs.)LOL, vent, cry and LAUGH alot.

> >

> > Please feel free to jump right in. I live in Calif,

> > am 49, married and have

> > 3 daughters. Have been dx with RP for almost 3

> > years.

> >

> > Again, welcome to the most wonderful group there is.

> >

> >

> > hugs

> > C

> >

>

>

> __________________________________________________

>

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, welcome to the group. Non of us is thrilled to be among the

membership as none of us chose to have RP. On the off chance that the first

info you got on this disease was that this is a death sentence, forget it,

while there is no cure for RP, it can be managed quite well. The first time

we hear about RP, we say " what the heck is it? " Then all the stuff you read

about it just scares you to death. Well, we have members who have had RP for

over 30 years, and they are still kicking. You will find such a wealth of

information from this group that is unbelievable! Ask just about any

question and I guarantee someone will have an answer, either from personal

experience or from research they've done. So DON'T PANIC! I can say that

now because, of course, the first thing I did was to panic! If there hadn't

been this group, I don't know what I would have done. They calmed me down

when I was bouncing off the walls! I was teriffied! And now, I can't say

that I enjoy having RP, but I know I can live with it! Pretty normally too!

Also, since I alway forget to share personal information, my name is Judy

Ostry, I am 53, and live in Hoffman Estates, IL (a suburb of Chicago). I

have been married to the same wonderful guy for (wait, I have to figure this

out) almost 32 years. I have two adult daughters, and Kerri. and

two BEAUTIFUL granddaughters (I'm not the least bit biased). Except that

and my babies live in Colorado. Otherwise, life would be just about

perfect!

Welcome, welcome, welcome! Don't be afraid to jump in on any email at any

time, I was afraid to at first, but that passes really fast! Also, something

you might want to know are the abbreviations everyone uses, they really

confused me at first, but LOL is either Lots of Laughs or Lots of Love,

ROFLOL is Rolling on floor laughing out loud ( I think I have that one

right). If someone uses one you don't understand, just ask! Take care and

LOL, Judy O

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Marilyn, I have the perfect welcome program for all newbys! Send them your

Amaretto Chips Bars receipe! What a welcome present! What do you think?

(You'll notice, of course, that I didn't offer the receipe). Love ya! Judy

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Welcome, please provide a first name, seems strange, but then.....That's

pretty typical for me. My name in Judy Ostry and I was dx with RP last

summer. My story is somewhat different as I was dx within 6-8 weeks of

onset, and went on Methotrexate right away. So, I do have hope for remission.

Please do not panic when you read the material on the web regarding this

disease, most of it is outdated. We have members who have had RP for years

and are still functiioning just fine! For a disease that affects so few

people, there is quite a bit of research going on. While RP cannot be cured

(YET), it can be managed. And we are all hoping that the research will find

a cure for each of us!

As for personal info: I am 53, married for almost 33 years to the same

wonderful man, I have two adult children, and two GORGEOUS (I am NOT

prejuidiced) granddaughters. I live in Hoffman Estates, IL (Suburb of

Chicago), and until a few weeks ago, I worked for L'Oreal Cosmetics, I am now

on disability, not from the RP, but I'v had a few strokes and seizures, and

the doctors decided it is time I retire. ly, I don't miss work at all,

makes me wonder why I've been killing myself for years!

Welcome, Judy O

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Welcome, please provide a first name, seems strange, but then.....That's

pretty typical for me. My name in Judy Ostry and I was dx with RP last

summer. My story is somewhat different as I was dx within 6-8 weeks of

onset, and went on Methotrexate right away. So, I do have hope for remission.

Please do not panic when you read the material on the web regarding this

disease, most of it is outdated. We have members who have had RP for years

and are still functiioning just fine! For a disease that affects so few

people, there is quite a bit of research going on. While RP cannot be cured

(YET), it can be managed. And we are all hoping that the research will find

a cure for each of us!

As for personal info: I am 53, married for almost 33 years to the same

wonderful man, I have two adult children, and two GORGEOUS (I am NOT

prejuidiced) granddaughters. I live in Hoffman Estates, IL (Suburb of

Chicago), and until a few weeks ago, I worked for L'Oreal Cosmetics, I am now

on disability, not from the RP, but I'v had a few strokes and seizures, and

the doctors decided it is time I retire. ly, I don't miss work at all,

makes me wonder why I've been killing myself for years!

Welcome, Judy O

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Welcome, please provide a first name, seems strange, but then.....That's

pretty typical for me. My name in Judy Ostry and I was dx with RP last

summer. My story is somewhat different as I was dx within 6-8 weeks of

onset, and went on Methotrexate right away. So, I do have hope for remission.

Please do not panic when you read the material on the web regarding this

disease, most of it is outdated. We have members who have had RP for years

and are still functiioning just fine! For a disease that affects so few

people, there is quite a bit of research going on. While RP cannot be cured

(YET), it can be managed. And we are all hoping that the research will find

a cure for each of us!

As for personal info: I am 53, married for almost 33 years to the same

wonderful man, I have two adult children, and two GORGEOUS (I am NOT

prejuidiced) granddaughters. I live in Hoffman Estates, IL (Suburb of

Chicago), and until a few weeks ago, I worked for L'Oreal Cosmetics, I am now

on disability, not from the RP, but I'v had a few strokes and seizures, and

the doctors decided it is time I retire. ly, I don't miss work at all,

makes me wonder why I've been killing myself for years!

Welcome, Judy O

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Dear Ute, Welcome to the group. so glad that you finally jumped in. I am on

pred and still have a runny nose. I have never had allergies in the past. I

always feel like a lot of mucous in the back of my throat. Like Dawn,

and Sandy have said... a plug. Keep trying to clear my throat and am real

hoarse at times. I am on two nasal sprays (prescription) can't remember

their name. LOL

Please keep posting... I live in California and am married and have 3

daughters, 26, 23 and 20 years old. One delightful grandaughter and a

stepgrandson. Have been dx with Rp for 2 years. I was on metho for a year

and then switched to Imuran. I just went off of that and am only on the pred

now. I did put my name on a waiting list for the Enbrel.

Good to have you in the group.

hugs

C

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In a message dated 04/23/2001 7:42:14 PM Central Daylight Time,

ulewis@... writes:

<< My doctor gave me some Flonase and Claritin, it doesn't

help. Does anyone have the same problems? >>

Ute, I had constant, severe sinus infections (with heavy dripping down the

back of my throat), I've been taking Duratuss-6 1200 mgs twice a day for

about two years - which is the same amount of time since I had a sinus

infection! Maybe that will help you. I know Duratuss-6 is the generic of

something that I can't recall, but I'm sure your dr will recognize it.

This is amazing since prior to this, I was on IV Vancomycin for two months

and it didn't help at all! Good luck! Love, Judy

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In a message dated 04/23/2001 7:42:14 PM Central Daylight Time,

ulewis@... writes:

<< My doctor gave me some Flonase and Claritin, it doesn't

help. Does anyone have the same problems? >>

Ute, I had constant, severe sinus infections (with heavy dripping down the

back of my throat), I've been taking Duratuss-6 1200 mgs twice a day for

about two years - which is the same amount of time since I had a sinus

infection! Maybe that will help you. I know Duratuss-6 is the generic of

something that I can't recall, but I'm sure your dr will recognize it.

This is amazing since prior to this, I was on IV Vancomycin for two months

and it didn't help at all! Good luck! Love, Judy

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In a message dated 05/10/2001 6:27:04 AM Central Daylight Time,

RCColloran@... writes:

<< yabbadabbadoo. >> Are you Fred or Wilma? Glad you found us! Don't know

what I'd do without this group! They provide information, support, empathy

and lots of laughs!

Welcome! feel free to jump right in with questions or comments, we all do!

LOL, Judy O

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Lynn

Welcome to our group. I am sorry that you have a reason to join but I

am glad that you found us. There are many on here that can answer

alot of questions for you. I know that finding the right doctor is

the most crucial. It is also sometimes the hardest thing to do. I

hope that you and will soon get the help that you need.

God Bless,

Belinda

> I have been monitoring this site for about a month. My husband was

> dx. with OPCA in May of 2000. We went to U. of Michigan to see Dr.

> Sid Gilman in December of 2000. At that time was strictly

> cerebellum. He has progressed rapidly. His symptoms now include

> periods of total disorientation to place and time, visual

> disturbances,feeling of urgency when voiding, no incontinency of

> ua,but occasional incontinency of stool. .He continues to work,he

has

> his own business. I suspect he has progressed to MSA but he refuses

> to be further evaluated.He did got to another neurologist lately

but

> he feels he is just being blown off because he does'nt know what to

> do for him. The Dr. did refer him to Baser in Pittsburgh, Pa.

> Is anyone familiar with her? I am rambling on please forgive me. I

> have so many questions. By the way is 46. We have 2 sons Luke

> 13, Cris 8. Thanks for allowing me a place to seek information and

> share experiences. sincerely Lynn Pattison

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Lynn, I'm the one Bill Werre referred to -my folks live 15 miles north of

Pgh.,dad (age 72) is diagnosed with MSA and currently is treating with Dr.

Baser. You did not say where you live. I am in process of getting

dad an appointment with Cleveland Clinic as they are doing a lot of research

in this field. I am personally NOT happy with Dr. Baser, and feels she

" blows off our concerns " . Dad has been on Artane, which Parkinson Institute

said they do not use for PD or MSA. Its an old drug, and since dad has

worsened, I am searching for newer treatment that may be more effective.

Dr. Baser's office did not call my mom back since we requested 3 weeks ago

that she do a phone consult with another neuro in Texas. I think they could

at least have someone call back. They are not very responsive, perhaps

practice is too busy. If you have other options I 'd go elsewhere. As of a

week ago, dad's primary doc. also feels its time to move him to another

doctor for another opinion.

I do not like boring everyone on the site with our lengthy problems, so if

you want to email me directly, feel free. I'll let you know how we make out

at Clinic. Cindy B.

new member

> I have been monitoring this site for about a month. My husband was

> dx. with OPCA in May of 2000. We went to U. of Michigan to see Dr.

> Sid Gilman in December of 2000. At that time was strictly

> cerebellum. He has progressed rapidly. His symptoms now include

> periods of total disorientation to place and time, visual

> disturbances,feeling of urgency when voiding, no incontinency of

> ua,but occasional incontinency of stool. .He continues to work,he has

> his own business. I suspect he has progressed to MSA but he refuses

> to be further evaluated.He did got to another neurologist lately but

> he feels he is just being blown off because he does'nt know what to

> do for him. The Dr. did refer him to Baser in Pittsburgh, Pa.

> Is anyone familiar with her? I am rambling on please forgive me. I

> have so many questions. By the way is 46. We have 2 sons Luke

> 13, Cris 8. Thanks for allowing me a place to seek information and

> share experiences. sincerely Lynn Pattison

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Cindy,

I may have given you the wrong info before, here is the doctor who I was talking

about:

Dr. Chelimsky, MD

Assistant Professor of Neurology

Director, Autonomic Disorders Division

Director, University Pain Center

Case Western Reserve University

Cleveland, Ohio

Phone:

Fax:

It was nice meeting your parents last week, sorry that I did not get to meet you

also. Are your mom and dad home now? I have held off emailing them until they

got home.

Take care, Bill Werre

Beck wrote:

> Lynn, I'm the one Bill Werre referred to -my folks live 15 miles north of

> Pgh.,dad (age 72) is diagnosed with MSA and currently is treating with Dr.

> Baser. You did not say where you live. I am in process of getting

> dad an appointment with Cleveland Clinic as they are doing a lot of research

> in this field. I am personally NOT happy with Dr. Baser, and feels she

> " blows off our concerns " . Dad has been on Artane, which Parkinson Institute

> said they do not use for PD or MSA. Its an old drug, and since dad has

> worsened, I am searching for newer treatment that may be more effective.

> Dr. Baser's office did not call my mom back since we requested 3 weeks ago

> that she do a phone consult with another neuro in Texas. I think they could

> at least have someone call back. They are not very responsive, perhaps

> practice is too busy. If you have other options I 'd go elsewhere. As of a

> week ago, dad's primary doc. also feels its time to move him to another

> doctor for another opinion.

> I do not like boring everyone on the site with our lengthy problems, so if

> you want to email me directly, feel free. I'll let you know how we make out

> at Clinic. Cindy B.

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Cindy B,

I am so sorry that you are having problems with your doctor. With all

the headaches that this illness causes having a bad doctor should not

be one of them. I pray that you will find the right doctor soon.

God Bless,

Belinda

> Lynn, I'm the one Bill Werre referred to -my folks live 15 miles

north of

> Pgh.,dad (age 72) is diagnosed with MSA and currently is treating

with Dr.

> Baser. You did not say where you live. I am in process of

getting

> dad an appointment with Cleveland Clinic as they are doing a lot of

research

> in this field. I am personally NOT happy with Dr. Baser, and feels

she

> " blows off our concerns " . Dad has been on Artane, which Parkinson

Institute

> said they do not use for PD or MSA. Its an old drug, and since dad

has

> worsened, I am searching for newer treatment that may be more

effective.

> Dr. Baser's office did not call my mom back since we requested 3

weeks ago

> that she do a phone consult with another neuro in Texas. I think

they could

> at least have someone call back. They are not very responsive,

perhaps

> practice is too busy. If you have other options I 'd go

elsewhere. As of a

> week ago, dad's primary doc. also feels its time to move him to

another

> doctor for another opinion.

> I do not like boring everyone on the site with our lengthy

problems, so if

> you want to email me directly, feel free. I'll let you know how we

make out

> at Clinic. Cindy B.

> new member

>

>

> > I have been monitoring this site for about a month. My husband was

> > dx. with OPCA in May of 2000. We went to U. of Michigan to see Dr.

> > Sid Gilman in December of 2000. At that time was strictly

> > cerebellum. He has progressed rapidly. His symptoms now include

> > periods of total disorientation to place and time, visual

> > disturbances,feeling of urgency when voiding, no incontinency of

> > ua,but occasional incontinency of stool. .He continues to work,he

has

> > his own business. I suspect he has progressed to MSA but he

refuses

> > to be further evaluated.He did got to another neurologist lately

but

> > he feels he is just being blown off because he does'nt know what

to

> > do for him. The Dr. did refer him to Baser in Pittsburgh,

Pa.

> > Is anyone familiar with her? I am rambling on please forgive me.

I

> > have so many questions. By the way is 46. We have 2 sons

Luke

> > 13, Cris 8. Thanks for allowing me a place to seek information and

> > share experiences. sincerely Lynn Pattison

> >

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

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Bill, Folks left this AM, should arrive home before dinner, depending on

rest stops. I agree, I " m not sure Dr. Tom is at Cleveland Clinic, but is at

Case Western's Univ. Hospital. I was not sure if they are connected. My

first call to his office was today, was told he is booked out to October.

(She said if PCP calls, they can get you in sooner-I'm working on that now.)

Dad's current doctor, Baser that this lady asked about comes very highly

recommended by a lot of physicians, including one neuro brain surgeon that

operated on mom years ago. She has not been very responsive to our needs,

and I wonder if its dad's age (72) - perhaps a younger patient would have

better reponse from busy doctors.

Re: new member

> Cindy,

>

> I may have given you the wrong info before, here is the doctor who I was

talking

> about:

>

> Dr. Chelimsky, MD

> Assistant Professor of Neurology

> Director, Autonomic Disorders Division

> Director, University Pain Center

> Case Western Reserve University

> Cleveland, Ohio

>

> Phone:

> Fax:

>

> It was nice meeting your parents last week, sorry that I did not get to

meet you

> also. Are your mom and dad home now? I have held off emailing them until

they

> got home.

>

> Take care, Bill Werre

>

> Beck wrote:

>

> > Lynn, I'm the one Bill Werre referred to -my folks live 15 miles north

of

> > Pgh.,dad (age 72) is diagnosed with MSA and currently is treating with

Dr.

> > Baser. You did not say where you live. I am in process of

getting

> > dad an appointment with Cleveland Clinic as they are doing a lot of

research

> > in this field. I am personally NOT happy with Dr. Baser, and feels she

> > " blows off our concerns " . Dad has been on Artane, which Parkinson

Institute

> > said they do not use for PD or MSA. Its an old drug, and since dad has

> > worsened, I am searching for newer treatment that may be more effective.

> > Dr. Baser's office did not call my mom back since we requested 3 weeks

ago

> > that she do a phone consult with another neuro in Texas. I think they

could

> > at least have someone call back. They are not very responsive, perhaps

> > practice is too busy. If you have other options I 'd go elsewhere. As

of a

> > week ago, dad's primary doc. also feels its time to move him to another

> > doctor for another opinion.

> > I do not like boring everyone on the site with our lengthy problems, so

if

> > you want to email me directly, feel free. I'll let you know how we make

out

> > at Clinic. Cindy B.

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Bill, Folks left this AM, should arrive home before dinner, depending on

rest stops. I agree, I " m not sure Dr. Tom is at Cleveland Clinic, but is at

Case Western's Univ. Hospital. I was not sure if they are connected. My

first call to his office was today, was told he is booked out to October.

(She said if PCP calls, they can get you in sooner-I'm working on that now.)

Dad's current doctor, Baser that this lady asked about comes very highly

recommended by a lot of physicians, including one neuro brain surgeon that

operated on mom years ago. She has not been very responsive to our needs,

and I wonder if its dad's age (72) - perhaps a younger patient would have

better reponse from busy doctors.

Re: new member

> Cindy,

>

> I may have given you the wrong info before, here is the doctor who I was

talking

> about:

>

> Dr. Chelimsky, MD

> Assistant Professor of Neurology

> Director, Autonomic Disorders Division

> Director, University Pain Center

> Case Western Reserve University

> Cleveland, Ohio

>

> Phone:

> Fax:

>

> It was nice meeting your parents last week, sorry that I did not get to

meet you

> also. Are your mom and dad home now? I have held off emailing them until

they

> got home.

>

> Take care, Bill Werre

>

> Beck wrote:

>

> > Lynn, I'm the one Bill Werre referred to -my folks live 15 miles north

of

> > Pgh.,dad (age 72) is diagnosed with MSA and currently is treating with

Dr.

> > Baser. You did not say where you live. I am in process of

getting

> > dad an appointment with Cleveland Clinic as they are doing a lot of

research

> > in this field. I am personally NOT happy with Dr. Baser, and feels she

> > " blows off our concerns " . Dad has been on Artane, which Parkinson

Institute

> > said they do not use for PD or MSA. Its an old drug, and since dad has

> > worsened, I am searching for newer treatment that may be more effective.

> > Dr. Baser's office did not call my mom back since we requested 3 weeks

ago

> > that she do a phone consult with another neuro in Texas. I think they

could

> > at least have someone call back. They are not very responsive, perhaps

> > practice is too busy. If you have other options I 'd go elsewhere. As

of a

> > week ago, dad's primary doc. also feels its time to move him to another

> > doctor for another opinion.

> > I do not like boring everyone on the site with our lengthy problems, so

if

> > you want to email me directly, feel free. I'll let you know how we make

out

> > at Clinic. Cindy B.

>

>

> 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, Folks left this AM, should arrive home before dinner, depending on

rest stops. I agree, I " m not sure Dr. Tom is at Cleveland Clinic, but is at

Case Western's Univ. Hospital. I was not sure if they are connected. My

first call to his office was today, was told he is booked out to October.

(She said if PCP calls, they can get you in sooner-I'm working on that now.)

Dad's current doctor, Baser that this lady asked about comes very highly

recommended by a lot of physicians, including one neuro brain surgeon that

operated on mom years ago. She has not been very responsive to our needs,

and I wonder if its dad's age (72) - perhaps a younger patient would have

better reponse from busy doctors.

Re: new member

> Cindy,

>

> I may have given you the wrong info before, here is the doctor who I was

talking

> about:

>

> Dr. Chelimsky, MD

> Assistant Professor of Neurology

> Director, Autonomic Disorders Division

> Director, University Pain Center

> Case Western Reserve University

> Cleveland, Ohio

>

> Phone:

> Fax:

>

> It was nice meeting your parents last week, sorry that I did not get to

meet you

> also. Are your mom and dad home now? I have held off emailing them until

they

> got home.

>

> Take care, Bill Werre

>

> Beck wrote:

>

> > Lynn, I'm the one Bill Werre referred to -my folks live 15 miles north

of

> > Pgh.,dad (age 72) is diagnosed with MSA and currently is treating with

Dr.

> > Baser. You did not say where you live. I am in process of

getting

> > dad an appointment with Cleveland Clinic as they are doing a lot of

research

> > in this field. I am personally NOT happy with Dr. Baser, and feels she

> > " blows off our concerns " . Dad has been on Artane, which Parkinson

Institute

> > said they do not use for PD or MSA. Its an old drug, and since dad has

> > worsened, I am searching for newer treatment that may be more effective.

> > Dr. Baser's office did not call my mom back since we requested 3 weeks

ago

> > that she do a phone consult with another neuro in Texas. I think they

could

> > at least have someone call back. They are not very responsive, perhaps

> > practice is too busy. If you have other options I 'd go elsewhere. As

of a

> > week ago, dad's primary doc. also feels its time to move him to another

> > doctor for another opinion.

> > I do not like boring everyone on the site with our lengthy problems, so

if

> > you want to email me directly, feel free. I'll let you know how we make

out

> > at Clinic. Cindy B.

>

>

> 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

A shut was considered but w/MSA am unsure if it will be of help. I will keep you informed and thanks for responding.

Bernice Stern

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A shut was considered but w/MSA am unsure if it will be of help. I will keep you informed and thanks for responding.

Bernice Stern

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A shut was considered but w/MSA am unsure if it will be of help. I will keep you informed and thanks for responding.

Bernice Stern

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Craig: Have them put the shunt in and drain the fluid. Your father my not

have MSA, but had an injury and the water on the brain is causing his

balance, speech problems. Hope this is all. Judy

abramson97 wrote:

> Hello:

>

> I've recently become the primary caregiver for my father, a 68 year

> old male with MSA. I just moved him in with me and my family here in

> Colorado. I'm busily getting a room ready for him on the main floor

> of our house, very close to the bathroom. He can only walk about 15-

> 30 feet at a time and usually sleeps very restlessly. (On the drive

> out, way stayed over nite in a hotel and I was quite sure that he'd

> died, because he didn't seem to make a sound for at least a minute,

> than he made this loud " AAAP " sound and started breathing again.

> Scared the heck out of me!).

>

> His most recent cat-scan indicated a lot of fluid on the brain. His

> doctor mentioned something about a shunt that can be put in to drain

> some of the pressure/liquid built up in his brain. Does anyone out

> there have exeriences with this procedure?

>

> Anyway, at this point I'm also looking for local resources in the

> Denver metro area. Support groups, specialists, etc.

>

> Thanks and I look forward to browsing the bookmarks.

>

> Craig

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

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