NEw Member

[Guest guest]

tamip@... writes:

> Janice

> what is a TENS unit?

Hi Tami,

A TENS unit (I forget the whole name for it) is a device that stimulates your

nerves on your skin. The theory is that your brain is concentrating on that

stimulant and not so much on the pain. There are patches that are applied

like Band-Aids to four different parts of your body, anywhere. I used them

on my neck-shoulder area and my back. It is hooked up to a control that you

adjust the frequency and amount of stimulant you like. It feels like a

vibrator on your skin.

It works, but can get irritating - because it vibrates your skin. I used it

everyday for all day and somedays after I took it off I still felt stimulated

and felt it was still on.

My insurance is a good one, so they paid for it since it is a durable medical

equipment and they pay for the supplies to it, without my insurance I would

not be able to afford it. My PT set me up to receive it.

I hope this helps. Look into it, they really do cut the level of pain for

me, but like everything else, at times I forget that I can have it and that I

can use it to decrease the pain

Let me know if you need anymore info. I can get the number for the company

that puts them out f you want

Sending Comfort and Peace

Janice

" I wish we could change our dials to AM instead of FM!!! "

[Guest guest]

Missy,

Welcome to the group. You will find a lot of the answers you are

seeking amongst this group of people, so feel free to ask anything. They

really are a great support too, if you just need to vent.

I get the same pain in the same place you do. I have found that

massage helps with the neck area, but have found no relief for the rib pain

yet. If you find something, please let me know and I will do the same.

I am 42, have had Fibro since 97 and have 3 children ages 20 - Male,

19 - Female and 18 - Female. They keep me running more now than they ever

did as little ones.

Anyhow, once again, welcome and I hope we can be of some help.

Debbie G.

new member

> Hi,

>

> I am 36 and I am a wife and mother of a wonderful husband and 11 year-

> old son. I was diagnosed with fribrmyalgia about 5 years ago and had

> been feeling a lot better. I had been having a lot of sinus troubl

> and had a couple of very painful spots on the base of my neck and the

> bottom of my right rib cage. I also have asthma which my doctor

> quickly pointed out that your lungs and hearts were muscles too.

> Does anyone know any suggestions to help ease the pain in my neck and

> rib cage. The other trigger points aren't as painful as these.

>

> thanks

>

> missy

>

>

>

>

>

> List owner Bierman

>

> Add or view webpage links about Fibromyalgia/CFS.

> http://www.onelist.com/links/

>

>

> ~*~CHAT TIME:~*~

> MON Night

> TIME:Eastern 9 Pm, Central 8 Pm, Mt 7 PM Pacific 6 PM

> WHERE: /chat/

>

> To write the list owner: The_List_Owner@...

>

> TO unsubscribe.

> Go to: http://www.onelist.com/ to this list and unsub from it.

>

>

>

>

>

>

[Guest guest]

Tami,

A tens unit is something that hooks onto your belt and has wires running

from it that are attached to electrodes that you place on areas of your body

that are in pain and it releases electrical impulses that are supposed to

help with the pain. These impulses can be made to go slower or faster

depending on how well they work for you.

I hope this helps.

Debbie G.

Re: new member

> Janice

> what is a TENS unit?

> =^..^= Tami =^..^=

>

>

>

>

[Guest guest]

Welcome Lorraine,

I think this group is great! We are all here to support one another. We

understand what it feels like and how we feel physically. I feel that I have

made some really good friends in this group, and they are always here for

each other.

Sending Comfort and Peace

Janice

" I wish we could change our dials to AM instead of FM!!! "

[Guest guest]

Welcome Lorraine,

I think this group is great! We are all here to support one another. We

understand what it feels like and how we feel physically. I feel that I have

made some really good friends in this group, and they are always here for

each other.

Sending Comfort and Peace

Janice

" I wish we could change our dials to AM instead of FM!!! "

[Guest guest]

Lorraine,

Welcome to the fibro-club, I think you will find that there are a lot of

caring people on this site. We all have something in common " PAIN " and

everyone understands what each other is going thru, the good days and the bad

days.We all have our down days when we get depressed and need encouragement

or just let out our frustration. But I know what you mean about can't sleep,

I have a sleeping disorder, so there's a lot of nights when I'm on the

computer at 2 or 3 am, this morn it was 4 am before I felt like I could

sleep. You mentioned you had children in Ohio, what part? I'm originally

from Cincinnati, but met my husband in college, and he is from ALABAMA, so we

have been living here now since 1979, we moved from Tenn. back to his

hometown where we opened our own pest control CO. We have 2 sons. My oldest

son is married, and she was from ARK .(Eldarado-sw) small world isn't it. My

youngest son is 26 and still single, and searching lol--but he works in the

co. with us. Then he is a studio musician on the side, he used to travel

with some different southern gospel groups, till he got tired of the road

life. My oldest son, travels on his job like your husband, they just

finished with a job in , Ga. he is a welder and a construction engineer,

so they have a fifth wheeler they take from place to place. I have one

granddaughter, she is two and the Queen of our household, so I'm enjoying

having them in town for the holidays, they own a house here, that they get to

live in about 2 months out of the yr. But it's nice for them to come home to

on the weekends when they can, depending how far away their job is. I was

diagnosed with FMS and chronic fatigue syndrome in June of 98, and like you

it was coming on gradually but I just did'nt recognize that the symptoms I

was having was adding up to something, so I actually felt relief when they

finally put a name to it, I was beginning to think either I was getting lazy

or it was all in my head. . I went to a chiropractor today that specializes

in fibromyalgia massage, it really felt good, I go back tomorrow for another

treatment. I hope you have a better night tonite andhope to talk with you

again.Tricia--ALA. or aknaynay98@... " HAPPINESS COMES WHEN WE STOP WAILING

ABOUT THE TROUBLES WE HAVE, AND OFFER THANKS FOR ALL THE TROUBLES WE DO NOT

HAVE " copied I have to remind myself of this all the time--I could have a

terminal illness instead of a chronic condition. Fibro hugs to you.

[Guest guest]

Lorraine,

Welcome to the fibro-club, I think you will find that there are a lot of

caring people on this site. We all have something in common " PAIN " and

everyone understands what each other is going thru, the good days and the bad

days.We all have our down days when we get depressed and need encouragement

or just let out our frustration. But I know what you mean about can't sleep,

I have a sleeping disorder, so there's a lot of nights when I'm on the

computer at 2 or 3 am, this morn it was 4 am before I felt like I could

sleep. You mentioned you had children in Ohio, what part? I'm originally

from Cincinnati, but met my husband in college, and he is from ALABAMA, so we

have been living here now since 1979, we moved from Tenn. back to his

hometown where we opened our own pest control CO. We have 2 sons. My oldest

son is married, and she was from ARK .(Eldarado-sw) small world isn't it. My

youngest son is 26 and still single, and searching lol--but he works in the

co. with us. Then he is a studio musician on the side, he used to travel

with some different southern gospel groups, till he got tired of the road

life. My oldest son, travels on his job like your husband, they just

finished with a job in , Ga. he is a welder and a construction engineer,

so they have a fifth wheeler they take from place to place. I have one

granddaughter, she is two and the Queen of our household, so I'm enjoying

having them in town for the holidays, they own a house here, that they get to

live in about 2 months out of the yr. But it's nice for them to come home to

on the weekends when they can, depending how far away their job is. I was

diagnosed with FMS and chronic fatigue syndrome in June of 98, and like you

it was coming on gradually but I just did'nt recognize that the symptoms I

was having was adding up to something, so I actually felt relief when they

finally put a name to it, I was beginning to think either I was getting lazy

or it was all in my head. . I went to a chiropractor today that specializes

in fibromyalgia massage, it really felt good, I go back tomorrow for another

treatment. I hope you have a better night tonite andhope to talk with you

again.Tricia--ALA. or aknaynay98@... " HAPPINESS COMES WHEN WE STOP WAILING

ABOUT THE TROUBLES WE HAVE, AND OFFER THANKS FOR ALL THE TROUBLES WE DO NOT

HAVE " copied I have to remind myself of this all the time--I could have a

terminal illness instead of a chronic condition. Fibro hugs to you.

[Guest guest]

Hello everyone,

I have been reluctant to write since we don't have a final diagnosis, but

the information has been very helpful to me. My husband was diagnosed with

cerebellar atrophy 4 months ago. Now his physician thinks he has MSA. We

will be going to Univ. of MI in Feb. to participate in a sleep study with

Dr. Gillian. Needless to say, we are devistated at the potential diagnosis,

but there seems to be a little more hope in the prognosis from your

experiences than the medical books. My husband is 53 yrs old, a physician,

and I am a nurse. We have 2 children 6 yrs and 12 yrs old. Just wanted to

make contact and have some support. We don't know what the future holds.

Thank you,

Jeanie

>

>Reply-To: shydrageregroups

>To: " sds " <shydrageregroups>

>Subject: Lonely in the chat room

>Date: Sun, 17 Dec 2000 16:17:01 -0400

>

>Anyone out there?

>

> Reminder: Chat Time Today

>

>

> > > Since winter is upon us and people have expressed interest lately in

> > > chatting we should set up some regular times where we can meet in the

>chat

> > > rooms. Sundays seemed to be a good day before. Since we have some

>people

> > > in the UK why don't we try an earlier time so they can join in. I'll

> > > suggest Sundays at 3PM eastern time which would be 8PM I think in the

>UK.

> > > We can add more chat times later as need be or people can just drop in

>the

> > > chatroom at any time on the chance others will be there.

> > >

> > > The preferred chat room from past experience seems to be the one where

>we

> > > use all use Netscape Instant Messenger.

> > > You can download the software from here if you don't already have it:

> > > http://www.aol.com/aim/ Click on " Get it Now "

> > >

> > > We have a chat room set up which you can access by going to my

>website:

> > >

> > > http://home.inforamp.net/~pbower/msachat.htm

> > >

> > > Click on " Join my chatroom " to enter.

> > >

> > > See you there at 3PM Eastern time today.

> > >

> > > Love,

> > > Pam

> >

> >

> >

> >

[Guest guest]

Jeanie,

While MSA is a rough disorder, it is usually less devastating than what you may

read. About 50% live more than ten years after diagnoses. It does rob some

quality of life, but if you accept the limitations it places on you and do your

range of motion exercises, you can maintain mobility for some time.

My wife, Charlotte was diagnosed in 1990 at 50 years of age as having

Parkinson's and in 1995 as MSA. She had no balance left by that time and

accepted a wheelchair. While the wheelchair has caused modifications to our

home and lifestyle, she is still around and still enjoys contact with the

grandkids. Not everyone has the balance problems. However, if you have balance

problems and don't use the wheelchair, falls can severely cut short your life.

Broken hips and other fractures can severely cut mobility.

The other thing you have to watch for is infection (urinary track, blood or

pneumonia). MSA patients run lower " normal " temperatures and at 98.6 may

already have a fever. MSA patients also have more trouble swallowing liquids

and tend to become dehydrated sooner than normal.

We do have at least two people who are over 22 years with MSA now and still

going. Many researchers feel there may be a cure in as little as five years.

So hang in there.

Take care, Bill and Charlotte Werre in Herndon, VA, USA

The on's wrote:

> Hello everyone,

>

> I have been reluctant to write since we don't have a final diagnosis, but

> the information has been very helpful to me. My husband was diagnosed with

> cerebellar atrophy 4 months ago. Now his physician thinks he has MSA. We

> will be going to Univ. of MI in Feb. to participate in a sleep study with

> Dr. Gillian. Needless to say, we are devistated at the potential diagnosis,

> but there seems to be a little more hope in the prognosis from your

> experiences than the medical books. My husband is 53 yrs old, a physician,

> and I am a nurse. We have 2 children 6 yrs and 12 yrs old. Just wanted to

> make contact and have some support. We don't know what the future holds.

>

> Thank you,

>

> Jeanie

>

> >

> >Reply-To: shydrageregroups

> >To: " sds " <shydrageregroups>

> >Subject: Lonely in the chat room

> >Date: Sun, 17 Dec 2000 16:17:01 -0400

> >

> >Anyone out there?

> >

> > Reminder: Chat Time Today

> >

> >

> > > > Since winter is upon us and people have expressed interest lately in

> > > > chatting we should set up some regular times where we can meet in the

> >chat

> > > > rooms. Sundays seemed to be a good day before. Since we have some

> >people

> > > > in the UK why don't we try an earlier time so they can join in. I'll

> > > > suggest Sundays at 3PM eastern time which would be 8PM I think in the

> >UK.

> > > > We can add more chat times later as need be or people can just drop in

> >the

> > > > chatroom at any time on the chance others will be there.

> > > >

> > > > The preferred chat room from past experience seems to be the one where

> >we

> > > > use all use Netscape Instant Messenger.

> > > > You can download the software from here if you don't already have it:

> > > > http://www.aol.com/aim/ Click on " Get it Now "

> > > >

> > > > We have a chat room set up which you can access by going to my

> >website:

> > > >

> > > > http://home.inforamp.net/~pbower/msachat.htm

> > > >

> > > > Click on " Join my chatroom " to enter.

> > > >

> > > > See you there at 3PM Eastern time today.

> > > >

> > > > Love,

> > > > Pam

> > >

> > >

> > >

> > >

[Guest guest]

Jeanie,

This disease is awful, but there is some hope in that it is possible

to maintain a reasonable quality of life for much longer than the

textbooks make it seem.

My husband is now 54, and was diagnosed almost 3 years ago with Shy-

Drager Syndrome - MSA with predominately autonomic manifestations.

He is definitely ill, but with medication, good nutrition and

exercise he is able to maintain an active life. He can not work

because he tires easily and has short term memory problems, but we

travel and he stays active around the house. He currently takes 8

prescription medications, plus several over the counter ones, and he

uses a CPAP machine at night because he has sleep anpea.

Good luck with the diagnosis, and please feel free to participate in

the group. If you've been reading for a while you know that we're

pretty helpful and always respond to questions.

Meanwhile, if I have only one piece of advice to give you and your

family, it is to cherish every moment and to make the best of

everything. None of us ever knows how life will turn out.

Happy holidays,

Carol & Rob

Lexington, Massachusetts

> Hello everyone,

>

> I have been reluctant to write since we don't have a final

diagnosis, but

> the information has been very helpful to me. My husband was

diagnosed with

> cerebellar atrophy 4 months ago. Now his physician thinks he has

MSA. We

> will be going to Univ. of MI in Feb. to participate in a sleep

study with

> Dr. Gillian. Needless to say, we are devistated at the potential

diagnosis,

> but there seems to be a little more hope in the prognosis from your

> experiences than the medical books. My husband is 53 yrs old, a

physician,

> and I am a nurse. We have 2 children 6 yrs and 12 yrs old. Just

wanted to

> make contact and have some support. We don't know what the future

holds.

>

> Thank you,

>

> Jeanie

>

>

> >From: " Pam Bower " <pbower@i...>

> >Reply-To: shydrageregroups

> >To: " sds " <shydrageregroups>

> >Subject: Lonely in the chat room

> >Date: Sun, 17 Dec 2000 16:17:01 -0400

> >

> >Anyone out there?

> >

> > Reminder: Chat Time Today

> >

> >

> > > > Since winter is upon us and people have expressed interest

lately in

> > > > chatting we should set up some regular times where we can

meet in the

> >chat

> > > > rooms. Sundays seemed to be a good day before. Since we

have some

> >people

> > > > in the UK why don't we try an earlier time so they can join

in. I'll

> > > > suggest Sundays at 3PM eastern time which would be 8PM I

think in the

> >UK.

> > > > We can add more chat times later as need be or people can

just drop in

> >the

> > > > chatroom at any time on the chance others will be there.

> > > >

> > > > The preferred chat room from past experience seems to be the

one where

> >we

> > > > use all use Netscape Instant Messenger.

> > > > You can download the software from here if you don't already

have it:

> > > > http://www.aol.com/aim/ Click on " Get it Now "

> > > >

> > > > We have a chat room set up which you can access by going to

my

> >website:

> > > >

> > > > http://home.inforamp.net/~pbower/msachat.htm

> > > >

> > > > Click on " Join my chatroom " to enter.

> > > >

> > > > See you there at 3PM Eastern time today.

> > > >

> > > > Love,

> > > > Pam

> > >

> > >

> > >

> > >

[Guest guest]

HI Jeanie, My husband was diagnosed this year with MSA. Welcome to the

group. I am a new member also. I am so pleased with the support that this

group gives. It has meant a lot to me and Dave, just to be able to talk to

someone who knows what MSA is, means a lot to us. We are from South Georgia,

and I don't know of one person here who has MSA. I have learned a lot from

this group. The only info we have been able to get has been from the

internet. This group has a vast knowledge of the disease and offers good

advice. I worked as a ICU nurse until last week, I made a decision to stay

home with Dave. If you ever need to talk, please feel free to email me at

any time. take care Kathy

>

>Reply-To: shydrageregroups

>To: shydrageregroups

>Subject: Re: New member

>Date: Mon, 18 Dec 2000 08:48:51 -0600

>

>Hello everyone,

>

>I have been reluctant to write since we don't have a final diagnosis, but

>the information has been very helpful to me. My husband was diagnosed with

>cerebellar atrophy 4 months ago. Now his physician thinks he has MSA. We

>will be going to Univ. of MI in Feb. to participate in a sleep study with

>Dr. Gillian. Needless to say, we are devistated at the potential diagnosis,

>but there seems to be a little more hope in the prognosis from your

>experiences than the medical books. My husband is 53 yrs old, a physician,

>and I am a nurse. We have 2 children 6 yrs and 12 yrs old. Just wanted to

>make contact and have some support. We don't know what the future holds.

>

>Thank you,

>

>Jeanie

>

>

> >

> >Reply-To: shydrageregroups

> >To: " sds " <shydrageregroups>

> >Subject: Lonely in the chat room

> >Date: Sun, 17 Dec 2000 16:17:01 -0400

> >

> >Anyone out there?

> >

> > Reminder: Chat Time Today

> >

> >

> > > > Since winter is upon us and people have expressed interest lately in

> > > > chatting we should set up some regular times where we can meet in

>the

> >chat

> > > > rooms. Sundays seemed to be a good day before. Since we have some

> >people

> > > > in the UK why don't we try an earlier time so they can join in.

>I'll

> > > > suggest Sundays at 3PM eastern time which would be 8PM I think in

>the

> >UK.

> > > > We can add more chat times later as need be or people can just drop

>in

> >the

> > > > chatroom at any time on the chance others will be there.

> > > >

> > > > The preferred chat room from past experience seems to be the one

>where

> >we

> > > > use all use Netscape Instant Messenger.

> > > > You can download the software from here if you don't already have

>it:

> > > > http://www.aol.com/aim/ Click on " Get it Now "

> > > >

> > > > We have a chat room set up which you can access by going to my

> >website:

> > > >

> > > > http://home.inforamp.net/~pbower/msachat.htm

> > > >

> > > > Click on " Join my chatroom " to enter.

> > > >

> > > > See you there at 3PM Eastern time today.

> > > >

> > > > Love,

> > > > Pam

> > >

> > >

> > >

> > >

[Guest guest]

Dear Bill and Charlotte,

Thank you for your prompt response. Yesterday I couldn't sit through church

or Sunday School without crying. I kept thinking the worst. But today after

reading your e-mail along with others, I have a better outlook as well as

hope. You just don't know how much your letter helped me. Now I feel we can

live a longer more productive life than what I had read previously in the

medical literature. I shall keep in touch.

Thanks again,

Jeanie

>

>Reply-To: shydrageregroups

>To: shydrageregroups

>Subject: Re: Re: New member

>Date: Mon, 18 Dec 2000 13:04:58 -0500

>

>Jeanie,

>

>While MSA is a rough disorder, it is usually less devastating than what you

>may

>read. About 50% live more than ten years after diagnoses. It does rob

>some

>quality of life, but if you accept the limitations it places on you and do

>your

>range of motion exercises, you can maintain mobility for some time.

>

>My wife, Charlotte was diagnosed in 1990 at 50 years of age as having

>Parkinson's and in 1995 as MSA. She had no balance left by that time and

>accepted a wheelchair. While the wheelchair has caused modifications to

>our

>home and lifestyle, she is still around and still enjoys contact with the

>grandkids. Not everyone has the balance problems. However, if you have

>balance

>problems and don't use the wheelchair, falls can severely cut short your

>life.

>Broken hips and other fractures can severely cut mobility.

>

>The other thing you have to watch for is infection (urinary track, blood or

>pneumonia). MSA patients run lower " normal " temperatures and at 98.6 may

>already have a fever. MSA patients also have more trouble swallowing

>liquids

>and tend to become dehydrated sooner than normal.

>

>We do have at least two people who are over 22 years with MSA now and still

>going. Many researchers feel there may be a cure in as little as five

>years.

>So hang in there.

>

>Take care, Bill and Charlotte Werre in Herndon, VA, USA

>

>

>The on's wrote:

>

> > Hello everyone,

> >

> > I have been reluctant to write since we don't have a final diagnosis,

>but

> > the information has been very helpful to me. My husband was diagnosed

>with

> > cerebellar atrophy 4 months ago. Now his physician thinks he has MSA. We

> > will be going to Univ. of MI in Feb. to participate in a sleep study

>with

> > Dr. Gillian. Needless to say, we are devistated at the potential

>diagnosis,

> > but there seems to be a little more hope in the prognosis from your

> > experiences than the medical books. My husband is 53 yrs old, a

>physician,

> > and I am a nurse. We have 2 children 6 yrs and 12 yrs old. Just wanted

>to

> > make contact and have some support. We don't know what the future holds.

> >

> > Thank you,

> >

> > Jeanie

> >

> > >

> > >Reply-To: shydrageregroups

> > >To: " sds " <shydrageregroups>

> > >Subject: Lonely in the chat room

> > >Date: Sun, 17 Dec 2000 16:17:01 -0400

> > >

> > >Anyone out there?

> > >

> > > Reminder: Chat Time Today

> > >

> > >

> > > > > Since winter is upon us and people have expressed interest lately

>in

> > > > > chatting we should set up some regular times where we can meet in

>the

> > >chat

> > > > > rooms. Sundays seemed to be a good day before. Since we have

>some

> > >people

> > > > > in the UK why don't we try an earlier time so they can join in.

>I'll

> > > > > suggest Sundays at 3PM eastern time which would be 8PM I think in

>the

> > >UK.

> > > > > We can add more chat times later as need be or people can just

>drop in

> > >the

> > > > > chatroom at any time on the chance others will be there.

> > > > >

> > > > > The preferred chat room from past experience seems to be the one

>where

> > >we

> > > > > use all use Netscape Instant Messenger.

> > > > > You can download the software from here if you don't already have

>it:

> > > > > http://www.aol.com/aim/ Click on " Get it Now "

> > > > >

> > > > > We have a chat room set up which you can access by going to my

> > >website:

> > > > >

> > > > > http://home.inforamp.net/~pbower/msachat.htm

> > > > >

> > > > > Click on " Join my chatroom " to enter.

> > > > >

> > > > > See you there at 3PM Eastern time today.

> > > > >

> > > > > Love,

> > > > > Pam

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Dear Bill and Charlotte,

Thank you for your prompt response. Yesterday I couldn't sit through church

or Sunday School without crying. I kept thinking the worst. But today after

reading your e-mail along with others, I have a better outlook as well as

hope. You just don't know how much your letter helped me. Now I feel we can

live a longer more productive life than what I had read previously in the

medical literature. I shall keep in touch.

Thanks again,

Jeanie

>

>Reply-To: shydrageregroups

>To: shydrageregroups

>Subject: Re: Re: New member

>Date: Mon, 18 Dec 2000 13:04:58 -0500

>

>Jeanie,

>

>While MSA is a rough disorder, it is usually less devastating than what you

>may

>read. About 50% live more than ten years after diagnoses. It does rob

>some

>quality of life, but if you accept the limitations it places on you and do

>your

>range of motion exercises, you can maintain mobility for some time.

>

>My wife, Charlotte was diagnosed in 1990 at 50 years of age as having

>Parkinson's and in 1995 as MSA. She had no balance left by that time and

>accepted a wheelchair. While the wheelchair has caused modifications to

>our

>home and lifestyle, she is still around and still enjoys contact with the

>grandkids. Not everyone has the balance problems. However, if you have

>balance

>problems and don't use the wheelchair, falls can severely cut short your

>life.

>Broken hips and other fractures can severely cut mobility.

>

>The other thing you have to watch for is infection (urinary track, blood or

>pneumonia). MSA patients run lower " normal " temperatures and at 98.6 may

>already have a fever. MSA patients also have more trouble swallowing

>liquids

>and tend to become dehydrated sooner than normal.

>

>We do have at least two people who are over 22 years with MSA now and still

>going. Many researchers feel there may be a cure in as little as five

>years.

>So hang in there.

>

>Take care, Bill and Charlotte Werre in Herndon, VA, USA

>

>

>The on's wrote:

>

> > Hello everyone,

> >

> > I have been reluctant to write since we don't have a final diagnosis,

>but

> > the information has been very helpful to me. My husband was diagnosed

>with

> > cerebellar atrophy 4 months ago. Now his physician thinks he has MSA. We

> > will be going to Univ. of MI in Feb. to participate in a sleep study

>with

> > Dr. Gillian. Needless to say, we are devistated at the potential

>diagnosis,

> > but there seems to be a little more hope in the prognosis from your

> > experiences than the medical books. My husband is 53 yrs old, a

>physician,

> > and I am a nurse. We have 2 children 6 yrs and 12 yrs old. Just wanted

>to

> > make contact and have some support. We don't know what the future holds.

> >

> > Thank you,

> >

> > Jeanie

> >

> > >

> > >Reply-To: shydrageregroups

> > >To: " sds " <shydrageregroups>

> > >Subject: Lonely in the chat room

> > >Date: Sun, 17 Dec 2000 16:17:01 -0400

> > >

> > >Anyone out there?

> > >

> > > Reminder: Chat Time Today

> > >

> > >

> > > > > Since winter is upon us and people have expressed interest lately

>in

> > > > > chatting we should set up some regular times where we can meet in

>the

> > >chat

> > > > > rooms. Sundays seemed to be a good day before. Since we have

>some

> > >people

> > > > > in the UK why don't we try an earlier time so they can join in.

>I'll

> > > > > suggest Sundays at 3PM eastern time which would be 8PM I think in

>the

> > >UK.

> > > > > We can add more chat times later as need be or people can just

>drop in

> > >the

> > > > > chatroom at any time on the chance others will be there.

> > > > >

> > > > > The preferred chat room from past experience seems to be the one

>where

> > >we

> > > > > use all use Netscape Instant Messenger.

> > > > > You can download the software from here if you don't already have

>it:

> > > > > http://www.aol.com/aim/ Click on " Get it Now "

> > > > >

> > > > > We have a chat room set up which you can access by going to my

> > >website:

> > > > >

> > > > > http://home.inforamp.net/~pbower/msachat.htm

> > > > >

> > > > > Click on " Join my chatroom " to enter.

> > > > >

> > > > > See you there at 3PM Eastern time today.

> > > > >

> > > > > Love,

> > > > > Pam

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Jeanie,

So sorry to find you here, but if in fact your husband has MSA this is the

place to be. It is so much support in so many ways. Do not be afraid to

ask ANYTHING. Somebody knows something about everything. There is life

after MSA. I know it sounds trite but there are still good times to be had

with your husband. Being a doctor perhaps he might be able to make some

good contacts to help in his treatment.

Good Luck,

Keep us posted

Dawn - Celeste O'Neill's sister (dx MSA March 2000)

Reminder: Chat Time Today

> >

> >

> > > > Since winter is upon us and people have expressed interest lately in

> > > > chatting we should set up some regular times where we can meet in

the

> >chat

> > > > rooms. Sundays seemed to be a good day before. Since we have some

> >people

> > > > in the UK why don't we try an earlier time so they can join in.

I'll

> > > > suggest Sundays at 3PM eastern time which would be 8PM I think in

the

> >UK.

> > > > We can add more chat times later as need be or people can just drop

in

> >the

> > > > chatroom at any time on the chance others will be there.

> > > >

> > > > The preferred chat room from past experience seems to be the one

where

> >we

> > > > use all use Netscape Instant Messenger.

> > > > You can download the software from here if you don't already have

it:

> > > > http://www.aol.com/aim/ Click on " Get it Now "

> > > >

> > > > We have a chat room set up which you can access by going to my

> >website:

> > > >

> > > > http://home.inforamp.net/~pbower/msachat.htm

> > > >

> > > > Click on " Join my chatroom " to enter.

> > > >

> > > > See you there at 3PM Eastern time today.

> > > >

> > > > Love,

> > > > Pam

> > >

> > >

> > >

> > >

[Guest guest]

Phil,

You did not say what medicines you are on. That would tell us what they are

doing to help you presently. Are you on any Parkinson's meds like Sinemet

(levodopa), Mirapex, Requip, Comtan, etc? Do they have you on something for the

dizziness when standing like Florinef or Midodrine?

Driving should cause worries. Do you feel the road is sometimes closing in on

you? You mention right side impairment which could cause you to lose control

and drive into oncoming traffic. You can have up and down periods where things

suddenly get worse, then improve. When you start falling and have one side

worse, it is time to strongly consider giving up driving.

Exercise is a personal thing and you should do as much as you feel comfortable

with. Do not push yourself to pain, but do enough to maintain range of motion.

Lots of stretching exercises help here. Eventually walking will probably become

a chore, but do it as long as you are not falling a lot. Swimming is also good

as long as you can. Breathing and speaking exercises are also good for you.

They can add years to both life and quality of life.

Keep a log of times of medicines, onset of symptoms, relief from symptoms, notes

of new symptoms, daily temperature and BP. Just before going to see the

neurologist, look them all over and sort of summerize them into one page listing

the 2 or 3 most troublesome symptoms. Do take a list of questions and make sure

you get the most important to you answered.

Symptoms change all the time, worse more than better usually. Work is up to

you, however, be aware than you can not get Medicare until you have been on SSDI

(disability) for two years. Also a diagnoses of MSA and some of the symptoms

you mention could qualify you for a " permanent " disability. Social Security

sometimes tells people they have to be " totally " disabled which is not true.

Incontinence is often a problem, there is a possibility that your doctor can

help with medicine. If not, you may have to go to a condom catheter or a

Depends type of solution.

Make sure you are drinking enough (50-64 ounces per day depending on your

weight). Cranberry juice does help prevent urinary tract infections (UTI's),

from what we have learned. Sudden changes for the worse are often a sign of

infection of some sort. Your normal temperature may be lower than 98.6, maybe

as low as 96.0.

Time is so difficult to predict it is not worth worrying about.. Exercise (both

range of motion and speech) as well as other hints you find here can add years.

Five years ago they would have told you you had 7 years to go, now 50% live more

than 10 years. Several here are over twenty years since diagnoses and one is at

27 years. But worry causes stress and eats up dopamine, so don't do it )

you are already short on dopamine.

Hope this answered some of your questions. Ask again for others and let us know

what meds you are taking.

Take care, Bill and Charlotte

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

PHILIP RICHARDSON wrote:

> I have been reading for some time and have obtained some great information and

now would like to get down to more detail.

>

> I am 48 years old and recently diagnosed with MSA. My basic symptoms are 1.

urinary urgency which can create bowel release if not answered immediately. 2.

Poor balance (although nothing major as yet - just the occasional bump. 3.

Restricted walking - the right leg and arm are significantly slower in movement.

4. Occasional lightheadedness on arising or climbing stairs. 5. Broken sleep

caused by urinary problems but then I find it difficult to get back to sleep. 6.

Overwhelming tiredness around 9 - 10 pm most nights. 7. Handwriting is cramped

and I find it difficult to actually write.

>

> I am still fairly active, I walk 4 - 5 km two / three times a week, mow the

lawns, swim most mornings - although once a good freestyler find that I no

longer have the co-ordination and have to stick to breaststroke.

>

> >From my reading of this site I know there is no definitive answer on how

quickly the disease progresses or what symptoms will develop. I am interested to

know how much exercise I should do and also note that running is bad. I used to

run everyday, I can't now - my legs lack the strength and co-ordination and I

lurch a fair bit, but why is it " bad " .

>

> Generally how long is it before reasonable quality of life diminishes. I am

still working and wish to continue, probably the major concern is driving which

because of slow leg movement on the foot pedals causes me worries.

>

> What can I do about the two hour wake up calls of a night? I'm flying to USA

in three weeks and am terrified of being seat bound from fasten seat belt lights

when I need to release. Any suggestions?

>

> I see my neuro in 5 months - what should I be recording to ask, what symptoms

indicate the disease is progressing or do the current ones just get worse?

>

> That's it for now, hope to hear from someone

>

> regards

>

> Phil

>

>

[Guest guest]

Hi Shay...Welcome. Franny

[Guest guest]

Welcome Shay! Glad to have you with us!

Peggy

¸

[Guest guest]

WELCOME TO OUR GROUP,

YOUR EXPERIENCE AND KNOWLEDGE WILL BE GREATLY APPRECIATED. I JUST TURNED 50

AND WAS DIAGNOSED IN JUNE 98 WITH FMS.CFS, I ALSO HAVE IBS, HYPOTHYROIDISM,

HIGH B/P, A SLEEPING DISORDER, A DEPRESSIVE DISORDER NOT OTHERWISE SPECIFIED

(WHAT EVER THAT MEANS), MIGRAINES, I THINK THAT'S ABOUT IT, WITH FIBRO-FOG

WHO KNOWS. BUT AGAIN WELCOME TO THE GROUP PATRICIA

[Guest guest]

Hi Pat:

Welcome! It's great to have you with us! I've had CFS and Fibromyalgia (in

addition to severe osteoporosis) for 10 years. I work at home part time and

have Social Security Disability. I'm sure that you will have a lot to share

with us! I'm 47 years old and single with three furry critters (cats).

Peggy

[Guest guest]

Sher, welcome, nice meeting you. You were not whinning, only voicing

how you feel, and we all can relate to that....

I understand how afraid you are now that you can't do the things that

you once did. But I am sure your hubby did not marry you for you biking

abilities. You are together for the love you share and it will see you

both through, just him finding this group and writing is proof of

that....so take care. I am glad you have cats, they can aid in helping

you cope some days. Pets are a big part of our lives and our well

being........Jan M.om to Spanky, the little rascal

http://community.webtv.net/janicelpn/

[Guest guest]

Sher, welcome, nice meeting you. You were not whinning, only voicing

how you feel, and we all can relate to that....

I understand how afraid you are now that you can't do the things that

you once did. But I am sure your hubby did not marry you for you biking

abilities. You are together for the love you share and it will see you

both through, just him finding this group and writing is proof of

that....so take care. I am glad you have cats, they can aid in helping

you cope some days. Pets are a big part of our lives and our well

being........Jan M.om to Spanky, the little rascal

http://community.webtv.net/janicelpn/

[Guest guest]

Hi Laurie! I'm Penny and I'm 16 and was diagnosed with fibro in October and

probably also have CFS. Where in Mass are you from? I'm from northern CT

(right on the border) so we could be fairly close:) take care

-Penny

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi Laurie and Penny...

I'm also in Mass. And I am looking to find a dr. who

can better understand the CFS/FMS stuff. I also have

been diagnosed with both. I had a great dr. when I

was in NC, but since moving here, I have yet to find a

Primary Care Physician with a lot of knowledge. I

know that Boston is one of the greatest places to be

in terms of finding good dr's, but I need to find a

specialist, and haven't had time to really locate one.

Any suggestions? Feel free to email me directly,

since this may not apply to many other folks.

--- Penelope Stowe wrote:

> Hi Laurie! I'm Penny and I'm 16 and was diagnosed

> with fibro in October and

> probably also have CFS. Where in Mass are you from?

> I'm from northern CT

> (right on the border) so we could be fairly close:)

> take care

> -Penny

>

>

>

>

_________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com

>

>

__________________________________________________

[Guest guest]

I am a couple of stone overweight since having my baby and although I

follow a low fat healthy diet I just can't shift it. I think its

because of the lack of real exercise - I also have a complaint called

Symphsysis Pubis Dysfunction which is seperation of the pelvis due to

pregnancy and this stops me doing swimming, aerobics and walking for

long periods. So apart from losing weight what can I do to help

myself??

Could you maybe do a little light weight lifting to build up some muscles??

Muscles burn more calories than fat, so if you increased your muscles, that

might help a bit. Also I think there are exercises that can be done while

sitting in a chair. You might be able to find a book in the library or

something on the web.

I do have a partner but he's less than useless

(god bless him!) in the house and with the baby. He's interested in

the baby but, and I quote (excuse the language) he's " been working

all day and can't be arsed doing anything other than eating and

sleeping " when he comes home. I do all the cooking, all the washing-

up, always bath the baby every night, make his sandwiches for the

next day and then I think of myself. I'm not trying to sound like a

martyr but basically if I don't do it, it doesn't get done.

Might I suggest that you start letting your partner do his own making up of

his sandwiches and his own laundry?? I have a very cooperative husband so I

don't have this problem, but I have seen articles before where the Mom of

the family goes on strike and does for either just herself or herself and

the kids. It seems to help, but I don't know your situation. When your

partner has to either make up sandwiches or go hungry (or buy his own lunch

every day), and either wear dirty clothes or do his own laundry, he may wake

up a bit. I know it did wake up my husband when we were separated on

different continents for six months, and I stopped sending my almost daily

letters because he'd write once a week, maybe. After he saw how it felt not

to get the mail, he was much better about writing. Remember you have a

illness and need to take care of yourself too!

So, in conclusion what can I do to make myself better? I don't have

time for this illness and there is no compromise in my life to be

made.

You're going to have to take time for this illness. I've only recently

realized that fibro is my latest illness and it irks me that I can't have

the life I've been having, but you have to take the time or you'll just wear

yourself out.

Welcome to the group.

Darcy

[Guest guest]

I sure agree with this about having your mate help out with chores, etc.

Now if I did not work, I would try to do all I could to support my husband

working....but since we both work, he digs in and does more around here than I

do....he can do it faster, :-(

Then we actually have time to sit on the porch and visit and wave to neighbors.

One person just can't carry the load, even if they were super healthy.

Jill

RE: New member

I am a couple of stone overweight since having my baby and although I

follow a low fat healthy diet I just can't shift it. I think its

because of the lack of real exercise - I also have a complaint called

Symphsysis Pubis Dysfunction which is seperation of the pelvis due to

pregnancy and this stops me doing swimming, aerobics and walking for

long periods. So apart from losing weight what can I do to help

myself??

Could you maybe do a little light weight lifting to build up some muscles??

Muscles burn more calories than fat, so if you increased your muscles, that

might help a bit. Also I think there are exercises that can be done while

sitting in a chair. You might be able to find a book in the library or

something on the web.

I do have a partner but he's less than useless

(god bless him!) in the house and with the baby. He's interested in

the baby but, and I quote (excuse the language) he's " been working

all day and can't be arsed doing anything other than eating and

sleeping " when he comes home. I do all the cooking, all the washing-

up, always bath the baby every night, make his sandwiches for the

next day and then I think of myself. I'm not trying to sound like a

martyr but basically if I don't do it, it doesn't get done.

Might I suggest that you start letting your partner do his own making up of

his sandwiches and his own laundry?? I have a very cooperative husband so I

don't have this problem, but I have seen articles before where the Mom of

the family goes on strike and does for either just herself or herself and

the kids. It seems to help, but I don't know your situation. When your

partner has to either make up sandwiches or go hungry (or buy his own lunch

every day), and either wear dirty clothes or do his own laundry, he may wake

up a bit. I know it did wake up my husband when we were separated on

different continents for six months, and I stopped sending my almost daily

letters because he'd write once a week, maybe. After he saw how it felt not

to get the mail, he was much better about writing. Remember you have a

illness and need to take care of yourself too!

So, in conclusion what can I do to make myself better? I don't have

time for this illness and there is no compromise in my life to be

made.

You're going to have to take time for this illness. I've only recently

realized that fibro is my latest illness and it irks me that I can't have

the life I've been having, but you have to take the time or you'll just wear

yourself out.

Welcome to the group.

Darcy