new member

[Guest guest]

Hi Joleen,

I'm Tracie, one of the moderators around here. Welcome tothe group. I'm sorry that you have sarc, but sinceyou do-- this is a good place to be. Many of us have had this for years (this is 13 yrs for me.)

Let us know if you've got questions, concerns, a good joke, whatever. We're here to help each other thru this jungle.

Sincerely,

Tracie

[Guest guest]

Hi Joleen and welcome to the group.....yes, you can join our group...you

do not need to have NS to join...there are many on the list who have been

through different episodes in our disease and are able to help you so just

ask questions, go back through the files, and etc. You will be surprised

at the info you can glean and learn from. We are always here to help you

and do not be afraid to post.....again, welcome! Glad to see you here

but certainly not glad you have Sarc.....

Hugs,

Darlene Arney

NS Moderator/Owner

>

>

>

> HI Everyone !!

>

> I am a new member here...My name is Joleen. I was diagnosed with

> Sarcoidosis about a year ago... I'm hoping I can learn alot about this

> from those of you whom have had this for some time. Even though I don't

> have Neurosarcoidosis, I'm hoping I can still join this group and learn

> from others. I feel the more info I can get the better aware I am...

> so, I'd like to say a big " HELLO " To everyone out there !!

> j:)

> MSN Toolbar provides one-click access to Hotmail from any Web page – FREE

> download!

>

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.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 Joleen and welcome to the group.....yes, you can join our group...you

do not need to have NS to join...there are many on the list who have been

through different episodes in our disease and are able to help you so just

ask questions, go back through the files, and etc. You will be surprised

at the info you can glean and learn from. We are always here to help you

and do not be afraid to post.....again, welcome! Glad to see you here

but certainly not glad you have Sarc.....

Hugs,

Darlene Arney

NS Moderator/Owner

>

>

>

> HI Everyone !!

>

> I am a new member here...My name is Joleen. I was diagnosed with

> Sarcoidosis about a year ago... I'm hoping I can learn alot about this

> from those of you whom have had this for some time. Even though I don't

> have Neurosarcoidosis, I'm hoping I can still join this group and learn

> from others. I feel the more info I can get the better aware I am...

> so, I'd like to say a big " HELLO " To everyone out there !!

> j:)

> MSN Toolbar provides one-click access to Hotmail from any Web page – FREE

> download!

>

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.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 Joleen and welcome to the group.....yes, you can join our group...you

do not need to have NS to join...there are many on the list who have been

through different episodes in our disease and are able to help you so just

ask questions, go back through the files, and etc. You will be surprised

at the info you can glean and learn from. We are always here to help you

and do not be afraid to post.....again, welcome! Glad to see you here

but certainly not glad you have Sarc.....

Hugs,

Darlene Arney

NS Moderator/Owner

>

>

>

> HI Everyone !!

>

> I am a new member here...My name is Joleen. I was diagnosed with

> Sarcoidosis about a year ago... I'm hoping I can learn alot about this

> from those of you whom have had this for some time. Even though I don't

> have Neurosarcoidosis, I'm hoping I can still join this group and learn

> from others. I feel the more info I can get the better aware I am...

> so, I'd like to say a big " HELLO " To everyone out there !!

> j:)

> MSN Toolbar provides one-click access to Hotmail from any Web page – FREE

> download!

>

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.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 Joleen welcome to our loving & helpful family my name

is Quint(aka-SARCDOG) I have been fighting sarc off/on since 1965

neurosarc since 1995 this makes me the old man of the

group....lol Once again welcome......Quint

[Guest guest]

Welcome Joleen to the group! I was diagnosed with Systemic Sarcoidosis a little over a year ago too. I haven't been diagnosed with Neurosarc. but I think it is involving my CNS. You don't have Neurosarc. to belong here, believe me. You will find a lot of info, support and friendship here. Its a great group and I don't know what I would have done without it in this past year! So feel free to jump right in, okay? Luv, Debbiej m wrote:

HI Everyone !!

I am a new member here...My name is Joleen. I was diagnosed with Sarcoidosis about a year ago... I'm hoping I can learn alot about this from those of you whom have had this for some time. Even though I don't have Neurosarcoidosis, I'm hoping I can still join this group and learn from others. I feel the more info I can get the better aware I am... so, I'd like to say a big "HELLO" To everyone out there !!

j:)

MSN Toolbar provides one-click access to Hotmail from any Web page – FREE download! ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Welcome, Joleen,

I'm sure you'll find out lots from this group! I certainly have, and you won't

find any bunch of folks more Loving or supportive either!

Love,

Jeri

[Guest guest]

Welcome, Joleen,

I'm sure you'll find out lots from this group! I certainly have, and you won't

find any bunch of folks more Loving or supportive either!

Love,

Jeri

[Guest guest]

Quint......

You are not an old man..........you are a WISE ONE! :-)

Hugs,

Darlene

>

>

>

>

> Hi Joleen welcome to our loving & helpful family my

> name

> is Quint(aka-SARCDOG) I have been fighting sarc off/on since 1965

> neurosarc since 1995 this makes me the old man of the

> group....lol Once again welcome......Quint

>

>

>

>

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.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]

Quint......

You are not an old man..........you are a WISE ONE! :-)

Hugs,

Darlene

>

>

>

>

> Hi Joleen welcome to our loving & helpful family my

> name

> is Quint(aka-SARCDOG) I have been fighting sarc off/on since 1965

> neurosarc since 1995 this makes me the old man of the

> group....lol Once again welcome......Quint

>

>

>

>

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.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]

T.Y. Darlene for thinking I am wise. If I could just get my

brain to stay home maybe I could be wise......Quint

[Guest guest]

T.Y. Darlene for thinking I am wise. If I could just get my

brain to stay home maybe I could be wise......Quint

[Guest guest]

T.Y. Darlene for thinking I am wise. If I could just get my

brain to stay home maybe I could be wise......Quint

[Guest guest]

HI Tracie,

Thanks for welcoming me to the group.. also hooked up with "rambilin' rose"... so I'm already starting to feel comfortable .. hoping to be able to get into the group chat... its been a really bad year for me... right now i'm fighting a really bad case of sinusitis -- nothing is working so far!!

so.. thats what got me thinking the sarcs might have something to do with it.. though i sure am hoping not... again.. thanks for welcoming me and will try to get more involved. etc..

joleen

j:)

From: tiodaat@... Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: NEW MEMBER Date: Tue, 11 May 2004 16:38:05 EDT

Hi Joleen,

I'm Tracie, one of the moderators around here. Welcome tothe group. I'm sorry that you have sarc, but sinceyou do-- this is a good place to be. Many of us have had this for years (this is 13 yrs for me.)

Let us know if you've got questions, concerns, a good joke, whatever. We're here to help each other thru this jungle.

Sincerely, Tracie MSN Toolbar provides one-click access to Hotmail from any Web page – FREE download!

[Guest guest]

HI Tracie,

Thanks for welcoming me to the group.. also hooked up with "rambilin' rose"... so I'm already starting to feel comfortable .. hoping to be able to get into the group chat... its been a really bad year for me... right now i'm fighting a really bad case of sinusitis -- nothing is working so far!!

so.. thats what got me thinking the sarcs might have something to do with it.. though i sure am hoping not... again.. thanks for welcoming me and will try to get more involved. etc..

joleen

j:)

From: tiodaat@... Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: NEW MEMBER Date: Tue, 11 May 2004 16:38:05 EDT

Hi Joleen,

I'm Tracie, one of the moderators around here. Welcome tothe group. I'm sorry that you have sarc, but sinceyou do-- this is a good place to be. Many of us have had this for years (this is 13 yrs for me.)

Let us know if you've got questions, concerns, a good joke, whatever. We're here to help each other thru this jungle.

Sincerely, Tracie MSN Toolbar provides one-click access to Hotmail from any Web page – FREE download!

[Guest guest]

HI Tracie,

Thanks for welcoming me to the group.. also hooked up with "rambilin' rose"... so I'm already starting to feel comfortable .. hoping to be able to get into the group chat... its been a really bad year for me... right now i'm fighting a really bad case of sinusitis -- nothing is working so far!!

so.. thats what got me thinking the sarcs might have something to do with it.. though i sure am hoping not... again.. thanks for welcoming me and will try to get more involved. etc..

joleen

j:)

From: tiodaat@... Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: NEW MEMBER Date: Tue, 11 May 2004 16:38:05 EDT

Hi Joleen,

I'm Tracie, one of the moderators around here. Welcome tothe group. I'm sorry that you have sarc, but sinceyou do-- this is a good place to be. Many of us have had this for years (this is 13 yrs for me.)

Let us know if you've got questions, concerns, a good joke, whatever. We're here to help each other thru this jungle.

Sincerely, Tracie MSN Toolbar provides one-click access to Hotmail from any Web page – FREE download!

[Guest guest]

Hello Everyone,

My name is Carole and I am a new member of this group. I am in the

middle of the process through the Fremont campus. I have met with

the surgeon, Dr. Dutta. He was very patient with my questions and I

felt very comfortable with him. I have never had surgery before and

I am feeling very nervous about this whole process.

I am currently struggling with losing my 10% before surgery. I have

been using the 1200 calorie diet they gave me at the orientation. It

has been very slow, only one pound a week. Any advice?

[Guest guest]

Carole:

Welcome to the group! Glad you found us, and congratulations on

getting as far as you have.

Don't give up on the 1200 calorie plan. My question to you is, have

you begun an exercise program? I know that exercise is practically a

dirty word in some circles, but let me tell you, it really sped up my

weight loss pre-op. Just remember, if you're just starting, be sure

to start out slow with attainable goals.

When I first started sit ups, I could barely do 10! Just prior to my

abdominoplasty, I was up to 250 per day, but that took about 9 months

to get up to that level. When I first started treadmill, I could

only do 20 mins at the lowest speed. Before my recent surgery, I

could do a light jog for 30 - 40 mins.

You are committing yourself to a new life. If you can make exercise

a part of your daily routine, the weight will come off faster. I

know it's a drag, and the weight never seems to come off fast enough,

but you will feel so much better physically when you exercise.

I hope that helps. Keep us updated on your progress. I've found

this group to be of such great value to my continued success. I hope

it is helpful to you too. Best of luck to you!

Gemello

open rny 06/03/03

reconstruction 05/25/04

-138 lbs

> Hello Everyone,

>

> My name is Carole and I am a new member of this group. I am in the

> middle of the process through the Fremont campus. I have met with

> the surgeon, Dr. Dutta. He was very patient with my questions and

I

> felt very comfortable with him. I have never had surgery before

and

> I am feeling very nervous about this whole process.

>

> I am currently struggling with losing my 10% before surgery. I

have

> been using the 1200 calorie diet they gave me at the orientation.

It

> has been very slow, only one pound a week. Any advice?

[Guest guest]

I agree with everything Gemello said. The mandatory pre op loss

really does get you in the mind set to follow this new way of life

before you are physically forced to. Look at it as a learning

process. Start giving up one thing at a time that wont be tolerated

after surgery like caffine and carbonation. That way you wont have to

make them all at once when you are recuperating after surgery.

> > Hello Everyone,

> >

> > My name is Carole and I am a new member of this group. I am in

the

> > middle of the process through the Fremont campus. I have met

with

> > the surgeon, Dr. Dutta. He was very patient with my questions

and

> I

> > felt very comfortable with him. I have never had surgery before

> and

> > I am feeling very nervous about this whole process.

> >

> > I am currently struggling with losing my 10% before surgery. I

> have

> > been using the 1200 calorie diet they gave me at the

orientation.

> It

> > has been very slow, only one pound a week. Any advice?

[Guest guest]

Hi Carole,

Welcome to a great group. I lost my 10% by mostly eating protein. I drank Pro-Blend for breakfast, ate 1/2 of a protein bar (Atkins) for break and had meat and salad for lunch. Dinner was usally meat and cottage cheese and jello for snack later. Sometimes I would have the protein drink for a second meal when I was really trying to get some weight off.

It worked for me, I am pre-op (until Monday) and I am below the goal they set for me at Richmond.

Best of luck to you.

Carolfourgirls4gk wrote:

Hello Everyone,My name is Carole and I am a new member of this group. I am in the middle of the process through the Fremont campus. I have met with the surgeon, Dr. Dutta. He was very patient with my questions and I felt very comfortable with him. I have never had surgery before and I am feeling very nervous about this whole process.I am currently struggling with losing my 10% before surgery. I have been using the 1200 calorie diet they gave me at the orientation. It has been very slow, only one pound a week. Any advice?

[Guest guest]

Hi Carole,

Welcome aboard. This group is my home on the internet and has provided me

with so much support and information that I can't imagine where I'd be without

it. I hope that it proves as valuable to you.

It is great to start hearing from folks going through the process at Fremont.

I think you are the 2nd or 3rd one to post here.

Please, would you let me know about any support groups out there? Fremont

would be a lot easier for me to get to than Richmond is. I liked the Oakland

group, but it conflicts with my Aqua Exercise class.

One pound a week is about what is considered normal and healthy for most

folks (those who haven't had surgery, that is). How much do you need to

lose? I hope you don't mind my asking - if you do, please, ignore the question.

If you really want to speed up the loss, try upping your exercise. I'll

confess that I never really followed Kaiser's 1200 calorie diet. I used

the Carbohydrate Addict's Diet as the basis of my eating plan and didn't

even follow it religiously. Of course, it took me 3 months to lose my mandated

37 pounds - might have been faster if I'd followed it more scrupulously.

I look forward to getting to know you. Please, keep posting and let us know

how you are doing as you progress on your journey.

All the best,

Kay

in San Leandro

open RNY 12/1/03

fourgirls4gk wrote:

Hello Everyone,

My name is Carole and I am a new member of this group. I am in the

middle of the process through the Fremont campus. I have met with

the surgeon, Dr. Dutta. He was very patient with my questions and I

felt very comfortable with him. I have never had surgery before and

I am feeling very nervous about this whole process.

I am currently struggling with losing my 10% before surgery. I have

been using the 1200 calorie diet they gave me at the orientation. It

has been very slow, only one pound a week. Any advice?

[Guest guest]

Welcome to the group,

I have had neuro sar since 1999. I also have really bad headaches. My Dr. says that goes along with the monster type disease. Anyway just wanted to say hi and if you have any questions just let me know.

[Guest guest]

Welcome to the group,

I have had neuro sar since 1999. I also have really bad headaches. My Dr. says that goes along with the monster type disease. Anyway just wanted to say hi and if you have any questions just let me know.

[Guest guest]

Welcome to the group,

I have had neuro sar since 1999. I also have really bad headaches. My Dr. says that goes along with the monster type disease. Anyway just wanted to say hi and if you have any questions just let me know.

[Guest guest]

Hey, Doc! This place is a hotbed for misdiagnosis, so I'm sure you will get

lots of replies. My problem was that all my symptoms were blamed on

viruses--hearing loss in both ears, facial palsy, extreme fatigue & muscle

weakness, weight loss. Oh, not all were blamed on a virus. My dry eyes

(sudden onset, intense itching) were blamed on " getting older. " Just

overnight--got that much older! Anyway, I'm 55, a nurse-midwife on

disability since last fall. Have pulmonary sarc, systemic & neuro sarc. By

the way, when I finally got sent to a neurologist because of tremors &

falling over, he did a bunch of tests which were basically negative, but

still believed I had NS. Of course, any of us who have researched this

disease know that the tests can all be normal. But when my family doctor (a

new one; not the virus guy) reviewed the results, he announced to me that

there was nothing wrong with me that diet & some exercise wouldn't cure! I

told him that I hadn't eaten right or exercised regularly for 20 years &

felt fine, until this abrupt change. Then he said that I probably thought

it was sudden, but it actually occurred over time, as I got older. I said,

" You don't even know me & you're telling me my medical history! My friends

& co-workers can tell you the DAY it started! " He made some snide remark &

he was history as far as I was concerned. He left the practice shortly

after that, so I wasn't the only one who thought he was an idiot.

Anyway, I've had the systemic symptoms (fatigue, weakness, etc.) for 4

years, slowly worsening. I've not had any remissions that I've noticed.

I've been on Pred & Imuran, but I saw a specialist at Indiana U. Med. Ctr.

who wants to get me off them, re-evaluate ACE, MRI, maybe another spinal

tap, then look at other treatment options, since I've not improved. There's

a possibility the drugs, esp. the Pred., have made me worse.

Anyway, that's a bit of my story. Welcome to the site. It's a great place

for info, support, a safe place to whine & vent, ask any questions. Rose

from Indiana

new member

> Hi

> I just joined today so I thought I would say hi to everyone. please

> excuse the yahoo name " Drdoom " it is my sons. He loves comic books

> although I have met several doctors over the past year that would fit

> that name also. I was diagnosed with neurosarcoidosis one year ago.

> It was a nightmare of a misdiagnosis and changing doctors, multiple

> hospitalizations and cranial nerve palsys, double vision and

> everything that goes with neurosarcoidosis. I currently have a great

> neuro doctor who I am forever greatful in helping me. I currently

> still take prednisone (which I really really hate) and I also take

> Immuron as an imune suppressor . I would really like to hear from

> others with this disease as I do not know a single person with it.

> My aunt has sarcoidosis in her lungs but no neuro. I have had

> several bouts of headaches that last weeks and then go away. Anyone

> else had that? Of course the last time I had an MRI to be sure and

> it was just a side effect headache thank goodness. My neuro was

> diagnosed through symptoms, MRI and spinal taps. Love that

> angiotension enzyme. I find it hard to believe how many diagnostic

> tests a person can undergo in a few days. I had 4 CT scans, 4 MRI, 1

> spinal tap, 1 bone scan, 1 angiogram and a chest x ray. Followed

> three weeks later by more MRI and another spinal tap. I must have

> donated at least 2 gallons of blood to the lab.

>

> I would love to hear from fellow mis-diagnosed patients. (My orignal

> family physician told me I was just fat and had high blood pressure

> and neck and back pain from my weight). Of course I fired him since

> it ended up I had meningitis and vasculitis.

>

> Anyway I seem to be rambling. Would love to hear from anyone out

> there. Is everyone in some type of remission or has anyone had

> reoccurrance of symptoms?

>

> Thanks

>

>

>

>

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.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

>

>