Re: Terri, Barb Swallowing Problems

[Guest guest]

To whichever Terri I am talking to, Sometimes I will start to speak and my lower jaw will almost jerk. I wonder if others can see it or if it is imperceptible. I feel it to the point where I stop the word and start again. My husband sees it, others don't. At other times it is more obvious. I will start to speak and a noise will come out but not a word or something like your mouth isn't functioning correctly and what you thought you were saying was not what you said but just bluah. Most of the time it is the minor stuff, thank God. When it gets bad I think I am having a stroke. My swallowing is affected also. I must always make sure I keep my head straight and my chin level when I am eating or I choke easily. I can tell that my disease is progressing my balance is getting much worse. Most days I have a hard time walking. That doesn't sound bad to those of you who can't walk but a few months ago I could walk pretty good. I fall asleep easily. I have fallen

asleep several times at the dinner table, and my husband had to wake me up twice with food in my mouth and I choked. The doctors have no answers for that. He changed my Paxil to Cymbalta but I will still fall asleep at the computer or reading the paper. My mind is quickly going, I used to watch the news a lot (6 months ago) now I never watch it. Sometimes the newspaper is two complicated for me. Some days I can't spell anything. Those are the days that I have more of the siezures and more problems with my speech. The spelling problems come after. Anyway, I still consider myself lucky. I have my hearing, my kidney function is normal, I am up and around. I was depressed last week because I have to move from the house I have lived in for thirty some years because I can't take care of it anymore. But hey, I can pack the boxes and I can go look at houses myself. There is a lot to be said for that. So I won't wallow in a pity puddle because of a house. I will be happy to find a new one. Hopefully I will find a new one. So, you asked a simple question and look what you got. Sorry, Barb mosaicgirl1 wrote: Hey Barb,This is the other Terri. What type of speech problems do you have? Ihave had speech problems in the past and am starting to have some morelately when I am really tired.Thanks.Terri G.> >> > Hello Everyone,> >> > This is the other Terrie () I'm still here. The Sarcoidosis> has been> > kicking my body bad. I have the VNA & Meals on wheels to help me> now. My> > motorized wheelchair and hospital bed are real life savers. The> meds aren't> > working again so they're planning on keeping the Steroids, Cellcept> and> > Remicade but changing the IV to ever 4 weeks instead of 8 weeks.> The Imuran,> > Cytoxan (po), Plaqinel, methotrexate

etc. haven't been working.> I've never> > had a remission since my diagnosis in December 1998. For those who> have had> > a remission do you still have to take the meds? I've been on> steroids for 6> > ? years and unable to get off, every time they start to lower the> dose the> > Sarcoidosis flares real bad. Enough of my babbling on.> >> > I've tried to get into chat but the Sarcoidosis brain caused me> to be> > unable to figure it out. If I'm awake at the next chat time I'll> try again.> > I don't post very often but I try to read all the emails. My best> wishes to> > all of you and hope for a pain free day. Those who are still able> to work> > pace your self and good luck. Before I ended up in the wheelchair> due to my> > bone Sarcoidosis in my hip & knees I was a Nurse for over 25> years.

I> > really miss working and being independent. When I have a bad> seizure and wet> > the bed, I'm at my lowest because my husband has to change it. It's> hard for> > him to deal with, he has said to the MD's the hardest thing is> watching> > someone you love dying in front of you and your unable to do> anything.> > Today's a hard day for me; I've been crying and feeling down. But> enough of> > my pity party. Take Care everyone and I'll try to post more often.> Love to> > all Terrie> >> >> >> > PS Congrats on your upcoming Marriage , I'm very happy for> you> >> >> >> >> >> >> >> > Check in time!> >> >> >> > Ok gang,> >> > It's time for roll-call. the list has been quiet lately, and we're> > wondering what's up with everyone. Have ya all gone to the chat> rooms? How> > do you like the chats-- we could use some feedback.> >> > I know that for the last bit, we had a shortage of chat hosts-- to> many of> > us have been to sick or recovering from surgery to be there.> >> > and Rose, hows the carpal tunnel sx healing? Ron, I know> you've been> > going thru some personal stuff-- I do hope you're ok. I saw that> you'll be> > back at the chats now. Thank you. Marla, what is up with you?> How are> >

you?> >> > Debbie, Quint, Rose, Connie, it's good to see all of you post.> >> > We are up to 420+ members, and for the "newbies"-- welcome. You've> found a> > place to ask questions, get some support and let out some> frustration or> > share some joy and laughter.> >> > As for me, I'm finding it takes a few days longer to bounce back> after my> > infusions, and this time I ended up with a whopper of a sinus> infection- so> > it's antibiotic time. Uggg.> >> > Kuwaiti Kim, are you out there? We're worried about you.> >> > Joan, check in my friend, I hope you're doing ok.> >> > To all the others, please if you've got questions, concerns,> whatever----> > let us know. Rose and Debbie and I are holding down the fort until> Darlene> > can be back-- so know that

if you do have questions-- fire them at> us.> > WE'll get to them within a day or so. We are still here for all> of you.> >> > With compassion and empathy for all of us,> > Tracie> > NS co-owner/moderator> >>>>>>>>>> ---------------------------------> Stay in the know. Pulse on the new Yahoo.com. Check it out.>

[Guest guest]

Hey

Barb,

I’m

still functional but have many strange things going on to, and they are

bothersome. I have trouble swallowing sometimes but not all the time liquid is

usually the worse, my doc said that was neuro related.  Sometimes my knees

buckle, and sometimes it’s my hips.  I teach and many times I stand before my

class frozen, can not remember what I was saying or even where I am in lecture,

talk about feeling stupidJ

But I just

do the best I can each day, I had to give up nursing as couldn’t make quick

decision or even remember some things, not a good thing when you are a L & D

nurse, but still functioning like you said, the awesome thing about everyone

here is that we all love and care for each other not matter where we are in the

disease process.  I love my Sarc family, don’t know where I would be without

all of you, each and everyone is a total blessing to me.

God

Bless,

Marl a

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of barb J.

Sent: Thursday, September 07, 2006

8:45 PM

To: Neurosarcoidosis

Subject: Re:

Terri, Barb Swallowing Problems

To whichever Terri I am talking to,

Sometimes I will start to speak and my lower jaw will almost jerk. I

wonder if others can see it or if it is imperceptible. I feel it to the point

where I stop the word and start again. My husband sees it, others don't. At

other times it is more obvious. I will start to speak and a noise will come out

but not a word or something like your mouth isn't functioning correctly and

what you thought you were saying was not what you said but just bluah. Most of

the time it is the minor stuff, thank God. When it gets bad I think I am having

a stroke. My swallowing is affected also. I must always make sure I keep my

head straight and my chin level when I am eating or I choke easily. I can tell

that my disease is progressing my balance is getting much worse. Most days I

have a hard time walking. That doesn't sound bad to those of you who can't walk

but a few months ago I could walk pretty good. I fall asleep easily. I have

fallen asleep several times at the dinner table, and my husband had to wake me

up twice with food in my mouth and I choked. The doctors have no answers for

that. He changed my Paxil to Cymbalta but I will still fall asleep at the

computer or reading the paper. My mind is quickly going, I used to watch the

news a lot (6 months ago) now I never watch it. Sometimes the newspaper is two

complicated for me. Some days I can't spell anything. Those are the days that I

have more of the siezures and more problems with my speech. The spelling

problems come after.

Anyway, I still consider myself lucky. I have my hearing, my kidney

function is normal, I am up and around. I was depressed last week because I

have to move from the house I have lived in for thirty some years because I

can't take care of it anymore. But hey, I can pack the boxes and I can go look

at houses myself. There is a lot to be said for that. So I won't wallow

in a pity puddle because of a house.

I will be happy to find a new one. Hopefully I will find a new one.

So, you asked a simple question and look what you got.

Sorry,

Barb

mosaicgirl1 <mosaicgirl1 (AT) yahoo (DOT) com>

wrote:

Hey Barb,

This is the other Terri. What type of speech problems do you have? I

have had speech problems in the past and am starting to have some more

lately when I am really tired.

Thanks.

Terri G.

> >

> > Hello Everyone,

> >

> > This is the other Terrie () I'm still here. The Sarcoidosis

> has been

> > kicking my body bad. I have the VNA & Meals on wheels to help me

> now. My

> > motorized wheelchair and hospital bed are real life savers. The

> meds aren't

> > working again so they're planning on keeping the Steroids, Cellcept

> and

> > Remicade but changing the IV to ever 4 weeks instead of 8 weeks.

> The Imuran,

> > Cytoxan (po), Plaqinel, methotrexate etc. haven't been working.

> I've never

> > had a remission since my diagnosis in December 1998. For those who

> have had

> > a remission do you still have to take the meds? I've been on

> steroids for 6

> > ? years and unable to get off, every time they start to lower the

> dose the

> > Sarcoidosis flares real bad. Enough of my babbling on.

> >

> > I've tried to get into chat but the Sarcoidosis brain caused me

> to be

> > unable to figure it out. If I'm awake at the next chat time I'll

> try again.

> > I don't post very often but I try to read all the emails. My best

> wishes to

> > all of you and hope for a pain free day. Those who are still able

> to work

> > pace your self and good luck. Before I ended up in the wheelchair

> due to my

> > bone Sarcoidosis in my hip & knees I was a Nurse for over 25

> years. I

> > really miss working and being independent. When I have a bad

> seizure and wet

> > the bed, I'm at my lowest because my husband has to change it. It's

> hard for

> > him to deal with, he has said to the MD's the hardest thing is

> watching

> > someone you love dying in front of you and your unable to do

> anything.

> > Today's a hard day for me; I've been crying and feeling down. But

> enough of

> > my pity party. Take Care everyone and I'll try to post more often.

> Love to

> > all Terrie

> >

> >

> >

> > PS Congrats on your upcoming Marriage , I'm very happy for

> you

> >

> >

> >

> >

> >

> >

> >

> > Check in time!

> >

> >

> >

> > Ok gang,

> >

> > It's time for roll-call. the list has been quiet lately, and we're

> > wondering what's up with everyone. Have ya all gone to the chat

> rooms? How

> > do you like the chats-- we could use some feedback.

> >

> > I know that for the last bit, we had a shortage of chat hosts-- to

> many of

> > us have been to sick or recovering from surgery to be there.

> >

> > and Rose, hows the carpal tunnel sx healing? Ron, I know

> you've been

> > going thru some personal stuff-- I do hope you're ok. I saw that

> you'll be

> > back at the chats now. Thank you. Marla, what is up with you?

> How are

> > you?

> >

> > Debbie, Quint, Rose, Connie, it's good to see all of you post.

> >

> > We are up to 420+ members, and for the " newbies " -- welcome.

You've

> found a

> > place to ask questions, get some support and let out some

> frustration or

> > share some joy and laughter.

> >

> > As for me, I'm finding it takes a few days longer to bounce back

> after my

> > infusions, and this time I ended up with a whopper of a sinus

> infection- so

> > it's antibiotic time. Uggg.

> >

> > Kuwaiti Kim, are you out there? We're worried about you.

> >

> > Joan, check in my friend, I hope you're doing ok.

> >

> > To all the others, please if you've got questions, concerns,

> whatever----

> > let us know. Rose and Debbie and I are holding down the fort until

> Darlene

> > can be back-- so know that if you do have questions-- fire them at

> us.

> > WE'll get to them within a day or so. We are still here for all

> of you.

> >

> > With compassion and empathy for all of us,

> > Tracie

> > NS co-owner/moderator

> >

>

>

>

>

>

>

>

>

> ---------------------------------

> Stay in the know. Pulse on the new Yahoo.com. Check it out.

>

[Guest guest]

Barb,

It is Terri G. I have problems finding words and sometimes I stutter.

Sometimes I just use the wrong word. I go through spells (I hope it is

the same for you) where I don't stutter or have problems with words and

then sometimes I just do feel as sharp as I used to. I am having some

problems with my tongue; the sensation is diminished on the left. My

numbness was just on the left side of my face but now it is moving on

the right side too. My doctor just looks at me funny when I tell him

that. I will be seeing him soon and I am going to insist that it is

time to go back to Neurology. I have not had any emgs or eegs and I

think it is time don't you?

Well, enjoy your weeked and I will say a prayer or two (or a million)

for you.

terri G

> > >

> > > Hello Everyone,

> > >

> > > This is the other Terrie () I'm still here. The Sarcoidosis

> > has been

> > > kicking my body bad. I have the VNA & Meals on wheels to help me

> > now. My

> > > motorized wheelchair and hospital bed are real life savers. The

> > meds aren't

> > > working again so they're planning on keeping the Steroids,

Cellcept

> > and

> > > Remicade but changing the IV to ever 4 weeks instead of 8 weeks.

> > The Imuran,

> > > Cytoxan (po), Plaqinel, methotrexate etc. haven't been working.

> > I've never

> > > had a remission since my diagnosis in December 1998. For those who

> > have had

> > > a remission do you still have to take the meds? I've been on

> > steroids for 6

> > > ? years and unable to get off, every time they start to lower the

> > dose the

> > > Sarcoidosis flares real bad. Enough of my babbling on.

> > >

> > > I've tried to get into chat but the Sarcoidosis brain caused me

> > to be

> > > unable to figure it out. If I'm awake at the next chat time I'll

> > try again.

> > > I don't post very often but I try to read all the emails. My best

> > wishes to

> > > all of you and hope for a pain free day. Those who are still able

> > to work

> > > pace your self and good luck. Before I ended up in the wheelchair

> > due to my

> > > bone Sarcoidosis in my hip & knees I was a Nurse for over 25

> > years. I

> > > really miss working and being independent. When I have a bad

> > seizure and wet

> > > the bed, I'm at my lowest because my husband has to change it.

It's

> > hard for

> > > him to deal with, he has said to the MD's the hardest thing is

> > watching

> > > someone you love dying in front of you and your unable to do

> > anything.

> > > Today's a hard day for me; I've been crying and feeling down. But

> > enough of

> > > my pity party. Take Care everyone and I'll try to post more often.

> > Love to

> > > all Terrie

> > >

> > >

> > >

> > > PS Congrats on your upcoming Marriage , I'm very happy for

> > you

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Check in time!

> > >

> > >

> > >

> > > Ok gang,

> > >

> > > It's time for roll-call. the list has been quiet lately, and we're

> > > wondering what's up with everyone. Have ya all gone to the chat

> > rooms? How

> > > do you like the chats-- we could use some feedback.

> > >

> > > I know that for the last bit, we had a shortage of chat hosts-- to

> > many of

> > > us have been to sick or recovering from surgery to be there.

> > >

> > > and Rose, hows the carpal tunnel sx healing? Ron, I know

> > you've been

> > > going thru some personal stuff-- I do hope you're ok. I saw that

> > you'll be

> > > back at the chats now. Thank you. Marla, what is up with you?

> > How are

> > > you?

> > >

> > > Debbie, Quint, Rose, Connie, it's good to see all of you post.

> > >

> > > We are up to 420+ members, and for the " newbies " -- welcome. You've

> > found a

> > > place to ask questions, get some support and let out some

> > frustration or

> > > share some joy and laughter.

> > >

> > > As for me, I'm finding it takes a few days longer to bounce back

> > after my

> > > infusions, and this time I ended up with a whopper of a sinus

> > infection- so

> > > it's antibiotic time. Uggg.

> > >

> > > Kuwaiti Kim, are you out there? We're worried about you.

> > >

> > > Joan, check in my friend, I hope you're doing ok.

> > >

> > > To all the others, please if you've got questions, concerns,

> > whatever----

> > > let us know. Rose and Debbie and I are holding down the fort until

> > Darlene

> > > can be back-- so know that if you do have questions-- fire them at

> > us.

> > > WE'll get to them within a day or so. We are still here for all

> > of you.

> > >

> > > With compassion and empathy for all of us,

> > > Tracie

> > > NS co-owner/moderator

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Stay in the know. Pulse on the new Yahoo.com. Check it out.

> >

>

>

>

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST

> SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST

> OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST

> SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST

>

> CHATROOM LINK: http://www.emxpc.net/chat/index.php

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

These strange diseases cause so many strange problems. 2 years ago NS (at least

they

think it is NS) caused paralysis of the right side of my throat and vocal chord.

I woke up

one morning and couldn't speak or swallow! This continued for 6 months until

they started

IVIG treatments. I had to learn to speak again from a speech pathologist. Now I

speak so

well they can't tell it happened, unless I try to sing, still can't do that. I

still have problems

swallowing liquids at times though. It goes down part way then my throat seems

to gorget

what to do. The liquid gets stuck, the muscles cramp up, real painful, then

everything

loosens up and I can swallow again. Not fun. I feel for everyone who has that.

The

confusion people talk about I have frequently. I think it is the NS. My doctors

think it is all

the medication.

> > > >

> > > > Hello Everyone,

> > > >

> > > > This is the other Terrie () I'm still here. The Sarcoidosis

> > > has been

> > > > kicking my body bad. I have the VNA & Meals on wheels to help me

> > > now. My

> > > > motorized wheelchair and hospital bed are real life savers. The

> > > meds aren't

> > > > working again so they're planning on keeping the Steroids,

> Cellcept

> > > and

> > > > Remicade but changing the IV to ever 4 weeks instead of 8 weeks.

> > > The Imuran,

> > > > Cytoxan (po), Plaqinel, methotrexate etc. haven't been working.

> > > I've never

> > > > had a remission since my diagnosis in December 1998. For those who

> > > have had

> > > > a remission do you still have to take the meds? I've been on

> > > steroids for 6

> > > > ? years and unable to get off, every time they start to lower the

> > > dose the

> > > > Sarcoidosis flares real bad. Enough of my babbling on.

> > > >

> > > > I've tried to get into chat but the Sarcoidosis brain caused me

> > > to be

> > > > unable to figure it out. If I'm awake at the next chat time I'll

> > > try again.

> > > > I don't post very often but I try to read all the emails. My best

> > > wishes to

> > > > all of you and hope for a pain free day. Those who are still able

> > > to work

> > > > pace your self and good luck. Before I ended up in the wheelchair

> > > due to my

> > > > bone Sarcoidosis in my hip & knees I was a Nurse for over 25

> > > years. I

> > > > really miss working and being independent. When I have a bad

> > > seizure and wet

> > > > the bed, I'm at my lowest because my husband has to change it.

> It's

> > > hard for

> > > > him to deal with, he has said to the MD's the hardest thing is

> > > watching

> > > > someone you love dying in front of you and your unable to do

> > > anything.

> > > > Today's a hard day for me; I've been crying and feeling down. But

> > > enough of

> > > > my pity party. Take Care everyone and I'll try to post more often.

> > > Love to

> > > > all Terrie

> > > >

> > > >

> > > >

> > > > PS Congrats on your upcoming Marriage , I'm very happy for

> > > you

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Check in time!

> > > >

> > > >

> > > >

> > > > Ok gang,

> > > >

> > > > It's time for roll-call. the list has been quiet lately, and we're

> > > > wondering what's up with everyone. Have ya all gone to the chat

> > > rooms? How

> > > > do you like the chats-- we could use some feedback.

> > > >

> > > > I know that for the last bit, we had a shortage of chat hosts-- to

> > > many of

> > > > us have been to sick or recovering from surgery to be there.

> > > >

> > > > and Rose, hows the carpal tunnel sx healing? Ron, I know

> > > you've been

> > > > going thru some personal stuff-- I do hope you're ok. I saw that

> > > you'll be

> > > > back at the chats now. Thank you. Marla, what is up with you?

> > > How are

> > > > you?

> > > >

> > > > Debbie, Quint, Rose, Connie, it's good to see all of you post.

> > > >

> > > > We are up to 420+ members, and for the " newbies " -- welcome. You've

> > > found a

> > > > place to ask questions, get some support and let out some

> > > frustration or

> > > > share some joy and laughter.

> > > >

> > > > As for me, I'm finding it takes a few days longer to bounce back

> > > after my

> > > > infusions, and this time I ended up with a whopper of a sinus

> > > infection- so

> > > > it's antibiotic time. Uggg.

> > > >

> > > > Kuwaiti Kim, are you out there? We're worried about you.

> > > >

> > > > Joan, check in my friend, I hope you're doing ok.

> > > >

> > > > To all the others, please if you've got questions, concerns,

> > > whatever----

> > > > let us know. Rose and Debbie and I are holding down the fort until

> > > Darlene

> > > > can be back-- so know that if you do have questions-- fire them at

> > > us.

> > > > WE'll get to them within a day or so. We are still here for all

> > > of you.

> > > >

> > > > With compassion and empathy for all of us,

> > > > Tracie

> > > > NS co-owner/moderator

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Stay in the know. Pulse on the new Yahoo.com. Check it out.

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST

> > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST

> > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST

> > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST

> >

> > CHATROOM LINK: http://www.emxpc.net/chat/index.php

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

,

I have been hoarse now for almost a month. I woke up one day and when I

was talking I felt like I was getting choked. The chord spasms

somewhat and then I sound breathy. The vocal specialist I saw, says

that he feels it happens to me when my body is the most fatigued. Then

one day I will wake up and feel better (less fatigue) and the hoarseness

is gone.

I am seeing my PCP tomorrow and hope there are some other ideas on a way

to figure out what is going on.

Thanks for the info.

Terri G.

> > > > >

> > > > > Hello Everyone,

> > > > >

> > > > > This is the other Terrie () I'm still here. The

Sarcoidosis

> > > > has been

> > > > > kicking my body bad. I have the VNA & Meals on wheels to help

me

> > > > now. My

> > > > > motorized wheelchair and hospital bed are real life savers.

The

> > > > meds aren't

> > > > > working again so they're planning on keeping the Steroids,

> > Cellcept

> > > > and

> > > > > Remicade but changing the IV to ever 4 weeks instead of 8

weeks.

> > > > The Imuran,

> > > > > Cytoxan (po), Plaqinel, methotrexate etc. haven't been

working.

> > > > I've never

> > > > > had a remission since my diagnosis in December 1998. For those

who

> > > > have had

> > > > > a remission do you still have to take the meds? I've been on

> > > > steroids for 6

> > > > > ? years and unable to get off, every time they start to lower

the

> > > > dose the

> > > > > Sarcoidosis flares real bad. Enough of my babbling on.

> > > > >

> > > > > I've tried to get into chat but the Sarcoidosis brain caused

me

> > > > to be

> > > > > unable to figure it out. If I'm awake at the next chat time

I'll

> > > > try again.

> > > > > I don't post very often but I try to read all the emails. My

best

> > > > wishes to

> > > > > all of you and hope for a pain free day. Those who are still

able

> > > > to work

> > > > > pace your self and good luck. Before I ended up in the

wheelchair

> > > > due to my

> > > > > bone Sarcoidosis in my hip & knees I was a Nurse for over 25

> > > > years. I

> > > > > really miss working and being independent. When I have a bad

> > > > seizure and wet

> > > > > the bed, I'm at my lowest because my husband has to change it.

> > It's

> > > > hard for

> > > > > him to deal with, he has said to the MD's the hardest thing is

> > > > watching

> > > > > someone you love dying in front of you and your unable to do

> > > > anything.

> > > > > Today's a hard day for me; I've been crying and feeling down.

But

> > > > enough of

> > > > > my pity party. Take Care everyone and I'll try to post more

often.

> > > > Love to

> > > > > all Terrie

> > > > >

> > > > >

> > > > >

> > > > > PS Congrats on your upcoming Marriage , I'm very happy

for

> > > > you

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Check in time!

> > > > >

> > > > >

> > > > >

> > > > > Ok gang,

> > > > >

> > > > > It's time for roll-call. the list has been quiet lately, and

we're

> > > > > wondering what's up with everyone. Have ya all gone to the

chat

> > > > rooms? How

> > > > > do you like the chats-- we could use some feedback.

> > > > >

> > > > > I know that for the last bit, we had a shortage of chat

hosts-- to

> > > > many of

> > > > > us have been to sick or recovering from surgery to be there.

> > > > >

> > > > > and Rose, hows the carpal tunnel sx healing? Ron, I

know

> > > > you've been

> > > > > going thru some personal stuff-- I do hope you're ok. I saw

that

> > > > you'll be

> > > > > back at the chats now. Thank you. Marla, what is up with you?

> > > > How are

> > > > > you?

> > > > >

> > > > > Debbie, Quint, Rose, Connie, it's good to see all of you post.

> > > > >

> > > > > We are up to 420+ members, and for the " newbies " -- welcome.

You've

> > > > found a

> > > > > place to ask questions, get some support and let out some

> > > > frustration or

> > > > > share some joy and laughter.

> > > > >

> > > > > As for me, I'm finding it takes a few days longer to bounce

back

> > > > after my

> > > > > infusions, and this time I ended up with a whopper of a sinus

> > > > infection- so

> > > > > it's antibiotic time. Uggg.

> > > > >

> > > > > Kuwaiti Kim, are you out there? We're worried about you.

> > > > >

> > > > > Joan, check in my friend, I hope you're doing ok.

> > > > >

> > > > > To all the others, please if you've got questions, concerns,

> > > > whatever----

> > > > > let us know. Rose and Debbie and I are holding down the fort

until

> > > > Darlene

> > > > > can be back-- so know that if you do have questions-- fire

them at

> > > > us.

> > > > > WE'll get to them within a day or so. We are still here for

all

> > > > of you.

> > > > >

> > > > > With compassion and empathy for all of us,

> > > > > Tracie

> > > > > NS co-owner/moderator

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Stay in the know. Pulse on the new Yahoo.com. Check it out.

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > > The Neurosarcoidosis Community

> > >

> > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST

> > > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST

> > > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST

> > > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST

> > >

> > > CHATROOM LINK: http://www.emxpc.net/chat/index.php

> > >

> > > Message Archives:-

> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > >

> > > Members Database:-

> > > Listings of locations, phone numbers, and instant messengers.

> > > http://groups.yahoo.com/group/Neurosarcoidosis/database

> > >

> > >

[Guest guest]

Hi Barb, Don't pass the "falling asleep" off without checking. Sarc attached my heart and caused it to be electrically miswired now. I have a pacer, but before I did & sometimes even now if I am having problems I will suddenly without warning be gone. It's not fainting, the only warning is an extreme fatigue, then you are just not there anymore. I hate it, pre pacer it caused me to wreck my car doing 77 mph on I-10. Thank God I did not hurt anyone else or get killed. An electrophysiologist has to figure this out, because the actual heart at times is for the most part normal, except for the electricalproblems///Connie"barb J." wrote: To whichever Terri I am talking to, Sometimes I will start to speak and my lower jaw will almost jerk. I wonder if others can see it or if it is imperceptible. I feel it to the point where I stop the word and start again. My husband sees it, others don't. At other times it is more obvious. I will start to speak and a noise will come out but not a word or something like your mouth isn't functioning correctly and what you thought you were saying was not what you said but just bluah. Most of the time it is the minor stuff, thank God. When it gets bad I think I am having a stroke. My swallowing is affected also. I must always make sure I keep my head straight and my chin level when I am eating or I choke easily. I can tell that my disease is

progressing my balance is getting much worse. Most days I have a hard time walking. That doesn't sound bad to those of you who can't walk but a few months ago I could walk pretty good. I fall asleep easily. I have fallen asleep several times at the dinner table, and my husband had to wake me up twice with food in my mouth and I choked. The doctors have no answers for that. He changed my Paxil to Cymbalta but I will still fall asleep at the computer or reading the paper. My mind is quickly going, I used to watch the news a lot (6 months ago) now I never watch it. Sometimes the newspaper is two complicated for me. Some days I can't spell anything. Those are the days that I have more of the siezures and more problems with my speech. The spelling problems come after. Anyway, I still consider myself lucky. I have my hearing, my kidney function is normal, I am up and around. I was depressed last week because I have to move from the house I have lived in for thirty

some years because I can't take care of it anymore. But hey, I can pack the boxes and I can go look at houses myself. There is a lot to be said for that. So I won't wallow in a pity puddle because of a house. I will be happy to find a new one. Hopefully I will find a new one. So, you asked a simple question and look what you got. Sorry, Barb mosaicgirl1 <mosaicgirl1 (AT) yahoo (DOT) com> wrote: Hey Barb,This is the other Terri. What type of speech problems do you have? Ihave had speech problems in the past and am starting to have some morelately when I am really tired.Thanks.Terri G.> >> > Hello Everyone,> >> > This is the other Terrie () I'm still here. The Sarcoidosis> has been> > kicking my body bad. I have the VNA & Meals on wheels to help me> now. My> > motorized wheelchair and hospital bed are real life savers. The> meds aren't>

> working again so they're planning on keeping the Steroids, Cellcept> and> > Remicade but changing the IV to ever 4 weeks instead of 8 weeks.> The Imuran,> > Cytoxan (po), Plaqinel, methotrexate etc. haven't been working.> I've never> > had a remission since my diagnosis in December 1998. For those who> have had> > a remission do you still have to take the meds? I've been on> steroids for 6> > ? years and unable to get off, every time they start to lower the> dose the> > Sarcoidosis flares real bad. Enough of my babbling on.> >> > I've tried to get into chat but the Sarcoidosis brain caused me> to be> > unable to figure it out. If I'm awake at the next chat time I'll> try again.> > I don't post very often but I try to read all the emails. My best> wishes to> > all of you and hope for a pain free

day. Those who are still able> to work> > pace your self and good luck. Before I ended up in the wheelchair> due to my> > bone Sarcoidosis in my hip & knees I was a Nurse for over 25> years. I> > really miss working and being independent. When I have a bad> seizure and wet> > the bed, I'm at my lowest because my husband has to change it. It's> hard for> > him to deal with, he has said to the MD's the hardest thing is> watching> > someone you love dying in front of you and your unable to do> anything.> > Today's a hard day for me; I've been crying and feeling down. But> enough of> > my pity party. Take Care everyone and I'll try to post more often.> Love to> > all Terrie> >> >> >> > PS Congrats on your upcoming Marriage , I'm very happy for> you> >>

>> >> >> >> >> >> > Check in time!> >> >> >> > Ok gang,> >> > It's time for roll-call. the list has been quiet lately, and we're> > wondering what's up with everyone. Have ya all gone to the chat> rooms? How> > do you like the chats-- we could use some feedback.> >> > I know that for the last bit, we had a shortage of chat hosts-- to> many of> > us have been to sick or recovering from surgery to be there.> >> > and Rose, hows the carpal

tunnel sx healing? Ron, I know> you've been> > going thru some personal stuff-- I do hope you're ok. I saw that> you'll be> > back at the chats now. Thank you. Marla, what is up with you?> How are> > you?> >> > Debbie, Quint, Rose, Connie, it's good to see all of you post.> >> > We are up to 420+ members, and for the "newbies"-- welcome. You've> found a> > place to ask questions, get some support and let out some> frustration or> > share some joy and laughter.> >> > As for me, I'm finding it takes a few days longer to bounce back> after my> > infusions, and this time I ended up with a whopper of a sinus> infection- so> > it's antibiotic time. Uggg.> >> > Kuwaiti Kim, are you out there? We're worried about you.> >> > Joan, check in my friend, I hope you're

doing ok.> >> > To all the others, please if you've got questions, concerns,> whatever----> > let us know. Rose and Debbie and I are holding down the fort until> Darlene> > can be back-- so know that if you do have questions-- fire them at> us.> > WE'll get to them within a day or so. We are still here for all> of you.> >> > With compassion and empathy for all of us,> > Tracie> > NS co-owner/moderator> >>>>>>>>>> ---------------------------------> Stay in the know. Pulse on the new Yahoo.com. Check it out.>