Re: Age

[Guest guest]

HI,

Sorry you've had to deal with neurosarcoidosis since early childhood. What a bummer.

Most of us are adults-- I'm 47 and have abeen fighting pulm/ocular sarc for the last 12 years. Four years ago, it came out of remission-- and went systemic and neuro.

So, what are you being treated with-- and how are you doing with this disease?

What you've been seeing is alot of banter, just us helping to keep each others spirits up. Several of us are very, very sick, and going thru some tough treatments. We need all the distraction and support we can get.

We're very much a family here, we laugh, cry, scream, rage, ask questions-- nothing is to stupid to ask-- we've all been there. .

I invite you to come on in-- get to know us, ask questions, share your story and we'll share ours. I will be on a vacation this week-- so Darlene or Debbie or Rose are available to answer questions. The rest of the gang will be around to share their stuff--

Sincerely,

Tracie

Co-owner/moderator

[Guest guest]

this group is very relavent to sarcoid and neuro sarcoid. dont forget, this

is not a medical group but a support group. many people here are dealing

with symptoms and diagnosis and episodes that are not only tough to handle

physically but mentally and emotionally. most of the people on this site

are adults with families, careers and children. with most of them, being

sick has challenged them as mothers, fathers, spouses and their work.

i am 21 but have had sarcoid since i was 16, neuro sarcoid to be exact. it

is very rare to have neurosarcoid, but if you stick around a while, you

will see how many people across the country and the world are just like you

and i. some of these people on the list have a history together as we have

been members for some time now, get to know them, ask questions and tell

your concerns. between all of us im sure you can find some help.

best,

nicole

>

>Reply-To: Neurosarcoidosis

>To: Neurosarcoidosis

>Subject: Age

>Date: Sun, 09 Jan 2005 22:14:02 -0000

>

>

>Hey people, I've just joined this group thing out of curiosity, and

>it seems a lot of it is pretty irrelavent to neurosarcoidosis, but

>anyways, I'm 17 and I have it (Have since I was 10) and was

>wondering, how old is everyone else who has it? How many people

>actually do have it? I don't know anyone who does...

>

>

>

[Guest guest]

Tracie,

We are

truly sarcoid sisters, I am almost 47, had sarcoid for 10 years and four years ago mine came out of

remission too and systemic then neuro, and if I remember

right we are both nurses?

Have

a great week!

Marla

Re:

Age

HI,

Sorry you've had to deal with neurosarcoidosis since early childhood.

What a bummer.

Most of us are adults-- I'm 47 and have abeen fighting pulm/ocular sarc for the

last 12 years. Four years ago, it came out of remission-- and went

systemic and neuro.

So, what are you being treated with-- and how are you doing with this

disease?

What you've been seeing is alot of banter, just us helping to keep each others

spirits up. Several of us are very, very sick, and going thru some tough

treatments. We need all the distraction and support we can get.

We're very much a family here, we laugh, cry, scream, rage, ask questions--

nothing is to stupid to ask-- we've all been there. .

I invite you to come on in-- get to know us, ask questions, share your story

and we'll share ours. I will be on a vacation this week-- so Darlene or

Debbie or Rose are available to answer questions. The rest of the gang

will be around to share their stuff--

Sincerely,

Tracie

Co-owner/moderator

~~~~

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NS CHAT:- Has been cancelled for now.

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[Guest guest]

Hi as for age I am 54 and 40 of my 54yrs I have had sarcoidosis.I hope finding

our loving family will be a great help to you as it has been to me.you say

that you don't know anyone with sarc will now you do. We all have stories to

tell about the sarc monster.I hope you stay around to be part of our helpful

loving family. Quint

Hey people, I've just joined this group thing out of curiosity, and

it seems a lot of it is pretty irrelavent to neurosarcoidosis, but

anyways, I'm 17 and I have it (Have since I was 10) and was

wondering, how old is everyone else who has it? How many people

actually do have it? I don't know anyone who does...

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

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 as for age I am 54 and 40 of my 54yrs I have had sarcoidosis.I hope finding

our loving family will be a great help to you as it has been to me.you say

that you don't know anyone with sarc will now you do. We all have stories to

tell about the sarc monster.I hope you stay around to be part of our helpful

loving family. Quint

[Guest guest]

Hey,

Sorry you feel the information irrelavent to neurosarcoidosis. On the other hand, I find the information helpful and I wouldn't want the flow to stop. Perhaps, because I've acquired the disease six months ago, and still learning about its effects. However, in this span of time, it's been an up hill battle. My doctors are learning about this disease through me, and by networking with other doctors in the field. I've been fairly lucky. I found this group, they share their information/experiences and I've used it to consult with my doctors. I go to my appointments prepared and I'm sure its helped the outcome of my treatment. This disease has been difficult, for me to deal with, but finding this website is a godsend. Marge.

rauripountain wrote:

Hey people, I've just joined this group thing out of curiosity, and it seems a lot of it is pretty irrelavent to neurosarcoidosis, but anyways, I'm 17 and I have it (Have since I was 10) and was wondering, how old is everyone else who has it? How many people actually do have it? I don't know anyone who does...~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message 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]

Hello.

I'm, sure if it is facts you need, than you should either use a search

engine and simply look up neuosarcoiidosis. Also, I have found that

the most detailed articles can be found via your public library

databases under medical journals or publications. This way you can

read without having to pay extra for the full text of some studies.

Also, if you use your search engine and look up Baughman, I know

that he has coauthored a number of journal articles about his drug

studies concerning neurosarcoidosis

He seems to be on the cutting edge of testing all of the general

autoimmune system disease drugs (all of the ones you've seen in the

last three years on the television adds for Reumatoid Arthritis, such

as Remicade and Humira (the last two drugs I've been on for my NS/

multi systemic sarc. I'll admit that when I first joined this group

in 2001, there wasn;t much on the web about NS, and what was in print

was very antiquated and just down right incorrect. However, I did some

straigh research lately to try to help educate my immunologist better

treat my disease.

I am 45 and have been very ill since 1995 without break, with off and

on symptoms for ten years previous to that. I was diagnosed with

probable multiple sclerosis for the first five years after my first

serious attack in 1995. In 2000, however, I went to my family doctor

with what I thought was my biannual pneumonia, but this time my x-ray

was much different. After being sent to a pulmonologist for a second

opinion, I was told I had pulmonary sarcoidosis. After that, the

neurologist I had been seeing for a year and a half told me I most

likely had neurosarc as well, but he did not treat our disease, and he

didn't know of any neurologists who did since there weren't enough of

us to make it " worthwhile " to study our illness. (My original neuro was

a wonderful doctor who retired from seeing patients to devote her time

to research and her two young children. I found out later after doing

a database of all of my labs for my first visit with Dr. Baughman in

Nov of 2001 that my beloved retired neuro had been searching for

sarcoidosis the entire time I was in her care, but m,y ACE level was

always exatly 25 -- by the time I went to see Dr. B. it was stuck at

115 for some time) Dr. B gave me a definite diagnosis of NS (I had

found a rheumatologist to treat me since I could not find an

immunologist at that time -- he let me stay on 60 mg of Prednisone for

over a year and then took my off way too quickly and sent me into a

downward spiral from which it took me two years to recovery, and even

then, my remissions have never been either long enough or nor nearly as

complete as I'd hoped. I have spent the past year and some bind in bed

nearly all the time. I am able to go to necessary things with the

helps of ritalin, but I've pretty much given up using it as the let

down is just too depressing and no one can stand my non-stop mouth and

nevous nature on the drug.

Sorry I've rambled much to mucn, as is my nature. I do hope you can

appreciate what this group has to offer. We are a rare group, and yes,

there are some here who do not know for certain that they do have NS

but they most certainly have symptoms that involve the nervous system,

and all have multi-systemic sarcoidosis, which is a very scary thing.

I used to bemoan being a victim of MS (when my sarc was only active in

my brain), but now I am envious of folks who have sarc in only one or

two organs or systems. As for me,. there is little left the sarc

hasn't ravaged. butI have recently had a suspected heart/lung condition

(pulmonary hypertension) ruled out, so I still have something to be

happry about. I also am not having as much luing involvement as I have

had, but unfortunately I have found out they are worse than I had

believed. I try to stay positive and dwell on the things I still can

do and the parts of my body which seem to be fighting harder than

others. I am also quite aware and understand that even though I have

this wretched Monster setting up house inside of most of me, my

external life is very comfortable and I have a great deal to be be

thankful for -- my loving and supportive husband, a supportive mother

who lives with me and takes care of me now that it is nearly impossible

for me to take care of myself. I have two sons who are healthy,

handsome, and intelligent, and each in their own way very special to

me. I am saddest for them that I took ill when they were only eight

and ten and they were robbed of a " normal " mother, although they and I

are very aware how my condition made it possible for me to be always at

their beck and call, if not to drive them around certainly to find ways

for them to have as normal a social life as possible and for them to

participate fully in any sport or lessons they wanted to take. I am

also much more able to concentrate on their educations now that I don't

have 150 other students to worry about every day (I was a high school

English teacher before I had to retire).

Enough already. I'm sorry for the super sized reply. I wish you all

the happiness and peace you can achieve, and I hope we can be a part of

helping you on your way.

Regards,

>

> Hey people, I've just joined this group thing out of curiosity, and

> it seems a lot of it is pretty irrelavent to neurosarcoidosis, but

> anyways, I'm 17 and I have it (Have since I was 10) and was

> wondering, how old is everyone else who has it? How many people

> actually do have it? I don't know anyone who does...

>

>

>

>

>

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

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> 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 Rauri (is that your name??),

Have you read Aisha Elderwyn's paper on Neurosarcoidosis? It's the best one

I've ever found for " regular people " . Go to www.elderwyn.com and scroll down

until you see the word " Neurosarcoidosis " . The word is a link to the paper. I

believe there are some statistics included. As I understand it, Sarcoidosis is

thought, now, to be fairly common, but only a very small percentage (like maybe

5%) has Neurological involvement. Mostly the Sarc starts in the lungs or eyes

or somewhere else and may or may not progress to the brain. My husband's case

is very rare, in that his Sarcoidosis began in his brain and spinal cord and has

never been anywhere else.

As to age, my husband is 40. I believe Carrots is not too much older than you,

though, and she is a memeber of the Group who has it.

AS to irrelavant communications, there really aren't any as long as we're kind

and tolerant. It's a SUPPORT group and we talk about and share anything that

could be supportive with those who want/need support. There are bound to be

religious and political differences between us, but we're all tied together by

this dreadful disease we're all fighting and that seems to overcome our

differences.

Anyway, welcome to this family-like group. I'm sure we are all deeply sorry you

have the Sarc-Monster, but we are happy you found us and welcome you with open

arms.

Much Love,

Jeri

In a message dated 1/9/2005 5:14:02 PM Eastern Standard Time, " rauripountain "

writes:

>

>

>Hey people, I've just joined this group thing out of curiosity, and

>it seems a lot of it is pretty irrelavent to neurosarcoidosis, but

>anyways, I'm 17 and I have it (Have since I was 10) and was

>wondering, how old is everyone else who has it? How many people

>actually do have it? I don't know anyone who does...

>

>

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

>The Neurosarcoidosis Community

>

>NS CHAT:- Has been cancelled for now.

>

>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]

Tracie,

I am so sorry to hear that your lung capacity has dropped again. As you know, I have lung

sarc also and so far mine is dropping slowly..........I am sending lots of hugs, prayers, and good

thoughts..........

Love ya,

Darlene

I've taught basic first aid to many boy scouts over the years, so it allowed me to keep up on my skills. Now I can't even imagine how I'd give CPR if I needed to-- I just came back from LA, and my lung capacity has slipped even more-- to 62%. My saturation levels have dropped to 92% just sitting and doing absolutely nothing. So-- it's 24/7 on oxygen. Can anyone tell me when the party starts????