Intro

March 15, 2001

> Can someone fill me in on this?? What's it suppose to do?

http://www.netromall.com/guai-support/

March 15, 2001

the only experience I have is my two asthmatic boys had to take this when they

were very young. It was a main ingredient in one of their meds I think...anyway,

it spaced them out and wired them for sound. Plus, they threw it up alot. It was

a liquid and tasted awful. I still remember the smell....ugh.

Jill

RE: Intro

Also, I have been reading about guaifasen (something like that). The people

on

the guai lists are convinced it works, but of course they would leave this

list

if they decided not. I am sure it works actually for some (or a lot of)

people. I

just would like to hear something of the other point of view, if anyone has

thoughts or experiences would you please share them?

Thanks,

Laurel

Can someone fill me in on this?? What's it suppose to do?

Thanks

Darcy

March 16, 2001

Well, it's in pills and purified, not full of sugar and coloring. Everyone (all

doctors) agree it is an extraordinarily safe medication.

Jillie wrote:

> the only experience I have is my two asthmatic boys had to take this when they

were very young. It was a main ingredient in one of their meds I think...anyway,

it spaced them out and wired them for sound. Plus, they threw it up alot. It was

a liquid and tasted awful. I still remember the smell....ugh.

> Jill

March 19, 2001

Well, it's in pills and purified, not full of sugar and coloring. Everyone

(all doctors) agree it is an extraordinarily safe medication.

I read this and felt compelled to point out, it may be safe, but that

doesn't mean someone might not react badly with it. Not that someone

shouldn't try something just because they might react, unless they have a

good reason to suspect they probably will react. Here's where my past

experience colored my thinking when I read this. I went in for pain and was

diagnosed with a bladder infection before all the test results had been

done. They gave me an antibiotic. I reacted badly with it. I swear, I

thought I was loosing my mind, I couldn't go to sleep and to me, it felt

like my mind was literally splintering and crawling off in different

directions. I'd mentally reach out to grab one part back and the other

parts would be crawling off. I finally got up and just broke down wailing

to my husband. We got a hold of a 24 hour pharmacy and the pharmacist said

yes, that was a possible, but rare side affect of the drug. He suggested

taking some Benadryl. After I calmed down, we reread the patient advisory

leaflet which said it was rare, but insomnia was a possible side affect (no

mention of mind splintering at all, naturally). I waited to call the on

call doctor until like 8 am the next morning. I've never been made out to

be a hypochondriac like that woman made me feel. She claimed she'd never

heard of that side affect and implied I was making it all up. She wouldn't

listen to me when I told her a pharmacist and the leaflet confirmed insomnia

was a side affect, even if it was rare. She refused to give me a

replacement antibiotic and said my test results came back negative. All in

all, it left me with a bad taste in my mouth.

The above in no way was meant to reflect badly on anyone (except the doctor

who wasn't my personal doctor).

Darcy

March 24, 2001

Welcome, Luna. It sounds like you have a lot of knowlege & experience to

share. Thanks for being here! Laurel

Luna s wrote:

> Hello, I'm taking a moment to introduce myself

> as I just joined your group. I'm 35, female, living

> w/healing from CFIDS/Fibro as well as

September 29, 2001

Wow, Barbera, thanks for the great and thorough response. You helped

answer so many questions!! I feel lucky to have such an " expert " in

this group!

Vickie in Spokane

_________________________________________________________

February 8, 2002

My DH's birthday is the 24th. I consider it the best day of the year

becasue it is the day he came into the world for me.

Lenore

Intro

Hi to the group!

I've been a member of this group since the end of December, when I

found out I became pregnant- by surprise! Anyway, my name is Jen, I'm 24 and

I live in Chicago. I read all the posts, but I only posted once. Anyway, I'm

about 12 1/2 weeks along, and getting more and more used to the idea of

being pregnant as each day passes! My boyfriend proposed to me 2 days

before we took the home pregnancy test, and once we found out about the

baby, we decided to move the big day closer, so I'll be getting married on

March 24th. At the time of the wedding, I'll be 19 weeks along. So far,

I've only gained about 6 lbs. Anyone have any ideas about how big I can

expect to be? I don't want to " show " in my dress, as all of my family

doesn't know I'm pregnant- my lovely mother is too embarrassed that her

unwed daughter got pregnant, so she won't tell any of the family. She has

made it a point to tell me not to mention the baby to any of my family. I

guess it makes her look bad, I don't know. But my mother is a whole other

issue.

My honeymoon is April 7th, and by then, I'll be 21 weeks. Should I expect to

have to buy maternity clothes for the trip?

Any input would be greatly appreciated! Thanks!

Jen

RNY 10/18/99

EDD 8/18/02

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February 10, 2002

Thanks for the welcome! I especially appreciate it because I feel

like a bit of an outsider even though I've been following everyone's

posts for almost a year now.

I'm really worried about the blood sugar thing. I know very few

people whose Type 2 diabetes wasn't " fixed " by the surgery, and the

few I've heard from are in their 50s or 60s. I didn't even get to go

off of insulin until 3 months out, and my doc has been talking lately

about putting me back on small doses to be aggressive. This is

really a big deal to me. I know I need to adjust my expectations

because everyone's different, but I'm having a hard time with it all

right now.

Thanks for being here, guys!

--Darla

September 11, 2003

Hi Gladys welcome to the group.. and I'm sorry to hear about your husband...Aisha , the one that started the group has a web site that has a detailed article of what sarcoidoisis is and how it affects the body along with current treatments and so on.. the address is www.elderwyn.com/neurosarcoidosis/ try that first and see if it can give you some clues as to what's going on with your husband... and once again welcome..

Hugs,

-- Intro

Hi!

My husband was diagnosed with sarcoidosis a little over 20 years

ago. Subsequently our little girl (now 20) was diagnosed with cancer

and his health issues kind of got forgotten while we got caught up

with life. Over the years, he has talked about his spleen flaring up

occasionally, etc. but nothing major. Now, he is having a full flare

up like he did at the very beginning. After doing some reading on

the web, I'm also wondering how many of the other health issues he's

faced over the past years may have been sarcoidosis related: Polyps

on his vocal cords, numbness and tingling in his fingers (for which

he had surgery to remove a bone spur on his spine), chronic arthritic

type pain in his hands, etc. Right now, he has a lot of congestion

in his chest and a chronic cough.

I'm doing now what I wish I had done years ago and trying to learn

all I can about this disease. For some reason, I got it in my head

that it ran its course in about ten years. Obviously, since its

twenty years later, I was wrong. What should we be doing to maintain

his health? What can I do to help him?

Thanks for being here.

Gladys Stefany

September 12, 2003

Thank you,

I only just skimmed through the article and have realized how

neglectfully my husband's illness has been attended to (or not). I

feel so badly. I'm going to be sure he checks into all of this.

Thank you!!!!!

Gladys

> Hi Gladys welcome to the group.. and I'm sorry to hear about your

husband..

> Aisha , the one that started the group has a web site that has a

detailed

> article of what sarcoidoisis is and how it affects the body along

with

> current treatments and so on.. the address is www.elderwyn

> com/neurosarcoidosis/ try that first and see if it can give you

some clues

> as to what's going on with your husband... and once again welcome..

>

> Hugs,

>

> -- Intro

>

> Hi!

>

> My husband was diagnosed with sarcoidosis a little over 20 years

> ago. Subsequently our little girl (now 20) was diagnosed with cancer

> and his health issues kind of got forgotten while we got caught up

> with life. Over the years, he has talked about his spleen flaring up

> occasionally, etc. but nothing major. Now, he is having a full flare

> up like he did at the very beginning. After doing some reading on

> the web, I'm also wondering how many of the other health issues he's

> faced over the past years may have been sarcoidosis related: Polyps

> on his vocal cords, numbness and tingling in his fingers (for which

> he had surgery to remove a bone spur on his spine), chronic

arthritic

> type pain in his hands, etc. Right now, he has a lot of congestion

> in his chest and a chronic cough.

>

> I'm doing now what I wish I had done years ago and trying to learn

> all I can about this disease. For some reason, I got it in my head

> that it ran its course in about ten years. Obviously, since its

> twenty years later, I was wrong. What should we be doing to maintain

> his health? What can I do to help him?

>

> Thanks for being here.

>

> Gladys Stefany

>

September 12, 2003

Gladys is he seeing a specialist for his Sarcoidosis?

If not he needs to.

A lot of what you described could be Sarcoid related, especially the chest problem and the cough.

High Blood Pressure, Cholesterol fluctuation, bowel problems, back pain, you name it, all this is related.

I never got treatment either but now I am we finally do have a treatment for this.

I do not know where you live, but here in Ohio we have an excellent doctor for Sarcoidosis.

Sharon

Intro

Hi!My husband was diagnosed with sarcoidosis a little over 20 years ago. Subsequently our little girl (now 20) was diagnosed with cancer and his health issues kind of got forgotten while we got caught up with life. Over the years, he has talked about his spleen flaring up occasionally, etc. but nothing major. Now, he is having a full flare up like he did at the very beginning. After doing some reading on the web, I'm also wondering how many of the other health issues he's faced over the past years may have been sarcoidosis related: Polyps on his vocal cords, numbness and tingling in his fingers (for which he had surgery to remove a bone spur on his spine), chronic arthritic type pain in his hands, etc. Right now, he has a lot of congestion in his chest and a chronic cough. I'm doing now what I wish I had done years ago and trying to learn all I can about this disease. For some reason, I got it in my head that it ran its course in about ten years. Obviously, since its twenty years later, I was wrong. What should we be doing to maintain his health? What can I do to help him?Thanks for being here.Gladys Stefany~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

September 12, 2003

Hi, Gladys. Welcome to our family. Don't beat yourself up about now

researching your husband's illness years ago; you were just assuming the

doctors knew what they were talking about. I'm an R.N. and when I was

diagnosed in 1994 with a lymph node biopsy, I was told that sarc usually

resolves on its own & it was never mentioned again. I did read a couple of

articles on it, with descriptions of neurologic, eye, heart, etc.

involvement, and thought, " Whew, I'm glad I don't have that kind of sarc! "

I didn't realize that sarc could attack any organ system, even years later.

Now I have bilateral hearing loss, neurological involvement, neuropathy in

my feet, cataracts (from the Prednisone to treat the sarc), and a few other

symptoms. You will find this group of people to be friendly, accepting,

loving, supportive and SMART. Glad you found us. Rose in Indiana