books about neurosarcoidosis

[Guest guest]

I am looking for books related to sarcoids, specifically

neurosarcoidosis. Does anyone have any titles that i could look for.

I see lots of books about Sarcoids but they just have a little blurb

about neurosarcoidosis. Any help would be greatly appreciated

Huggs

karen

[Guest guest]

,

There aren't any books about neurosarcoidosis. FSR has brochures about sarc and cardiac sarc, etc.

Sadly, they still think that NS is 1/100,000 so why write a book.

Honestly, I am in the process of putting together a book on dealing with NS and multi-system sarc, with much of what I've shared with all of you, along with some sites and articles that I've found helpful.

What is it that you want in the way of info? How can we help. We have literally 1,000's of posts with links to different articles, all of them available without cost directly from the web.

Take care,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Tracie, Thanks i will check the posts.. I guess i am looking for answers. I feel like i need and want to know every thing i can about this disease so i can deal with what comes. And at this moment even though i have had this for several years i feel like it is my first day on the block. That some where there is some thing that i don't know that could maybe help keep me going just a little longer. Sounds silly i know but, i think that's what i am looking for. My Neuro is wonderful but, i am the only person she is treating with my disease. I feel like i need to know every thing i can so i can help her help me. I guess i am looking for someone like you who will put all of the things we know and don't know in one big book instead of a 1/4 of a paragraph in 13 different medical books. My sarcoids started in my brain and they say that is the rarest... it must be because it took them 7 years to figure

it out. They worked dilligently and hard but, like you said it is very rare. Thanks for what your doing, your doing what i talked about, some thing to make it better for the next person who has this disease so maybe their life will be a little easier. I am keeping a journal of what happened,all of the misdiagnoses and meds that i have tried and what happended hoping that someone will have it a little easier. I am also sharing the facts, that i know, no opinions with anyone who doesnt know. Hoping that i can help the mext person. Thanks for your reply,

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Thank you to everyone who replied to my question. As much as i hate that

everyone has this disease it is nice to know that people have the same

feelings as i do and i am not so alone.

Tracie,

It was like you were in my head.. except for the barganing.. i didn't

bargan (i don't think) I was glad it was me and not my children or my

mom or anyone else in my family. I said why not me and maybe i can help

someone else. My brother has MS and It was a family project to keep him

as happy and well as he could be. He is now in a nursing home and can't

walk, actually he's at the point where he barely gets out of bed. I have

an elderly mother who lives with me that i try to take care of and one

young man left at home. I just recently became a grandma for the first

time and i believe that trigered some anger that i didn't know that i

had. My goal was to live long enough to see my children graduate from

high school and get on their way with life and be well enough to know

that their ok. Then here comes this presious little girl and now want

what the rest of the world has the oportunity to spoil that baby and

watch her grow up. I don't want to be a burden to my family and i know i

already am. So, i am looking for answers about how long i might have to

be able to take care of myself and if there is any thing i can do to be

as well as i can be. I have visited this plan several times and realize

that there are only so many things i can do. This thing has total

control of my life and my body. I am huge because of the steroids and

no matter how many water arobics i do i am stuck at an unhealthy weight

and can't seem to make it go away. then i read that people with NS do

not have an appetite. I don't but I sure look like i do. Anyway i am

sure that there will be many chalanges ahead and i want to be prepared.

I feel like the more i know the more i can deal with things as they

come. Anyway, thanks for making me not feel so alone and now it is time

to learn what i can and pick myself up and start again.

Huggs to all

>

>

> In a message dated 11/14/2007 9:11:11 A.M. Pacific Standard Time,

> kap2569@... writes:

>

> I guess i am looking for answers. I feel like i need and want to know

> every thing i can about this disease so i can deal with what comes.

And

>

>

> ,

> I so totally understand. Like you, I'm just trying to help put the

puzzle

> pieces together in a format that we can use. I do like the brochures

at FSR--

> they are the exact wording I used way back when I first joined, and

some of

> what the original founder of this site put together.

> I do believe they've put together the best- and it is still just for

the

> layman that wants to say that sarc is a multi-system autoimmune

disease that

> changes the structure of our organs so they don't work like they

should. YADA

> YADA

>

> We all know the story-- it starts every article we've ever opened and

is

> straight from the Merck Manual- around the early 1950's.

>

> One of the immediate reactions I had reading your post is that you are

in

> that wonderful place of BARGAINING. In Kubler-Ross-- 5 STAGES OF

GRIEVING-- we

> find ourself dealing with the grief of chronic illness.

>

> We get the diagnosis, and immediately go into DENIAL. This can't be

> happening to me-- I eat right , exercise, work, get the kids to

soccer, and on and

> on.

>

> Next we end up in BARGAINING. We look under every nook and crany to

find

> answers. We seek out numerous doctors, tests, xrays, mri's lab

studies, EEG's

> EKG's, EMG's, Neuropsych testing, herbs, vitamins, minerals, snake

oil-- you

> get the picture. We see psychologists, pyschiatrists, MD's, PhDs,

> Chiropractors, Acupuncturists, Naturopaths, and more.

>

> From this point, we get ANGRY. No one has all the answers, and each of

the

> providers-- especially in our wonderful world of Western Medicine-- a

doctor

> for each body part-- and they aren't going to agree or even talk to

the

> others-- so we are out big bucks-- and not much better. We do weigh

more-- the

> prednisone they've treated us with has made that possible (ok, insert

cynisym)

> and we are still sick.

>

> So, what next-- DEPRESSION kicks in. Yep, we end up depressed because

we

> don't have the answers, we're financially strapped, physically and

emotionally

> exhausted, and we are dealing with a fatigue that makes us realize

that

> getting the worst possible case of the flu would be a step up. At

least the

> fatigue from that will go away. Our brain chemistry is screwed up by

the meds

> we're on, our hormones may be seriously screwed up from the

sarcoidosis and the

> chronic systemic inflammation that invades every inch of our being.

Our

> jobs, careers, relationships, marriages, social life and friendships

have all

> been forceably redefined. We will have to fight with our insurance

carriers

> and our MD's to get the meds that might help. After all, they aren't

FDA

> approved for " sarcoidosis-- the benign, nothing to it, ignore it, in 2

years

> you'll never know you had it disease. " Oh, and you've not slept for

months, and

> those brain chemicals that regulate mood are out of balance, and you

are

> depressed!!

>

> That being said-- you come to a place of ACCEPTANCE. This is where we

> finally say- wow, I've done XYZ and I've seen every guru and I'm still

sick with

> sarcoidosis. We finally allow ourself to take that deep breath, and

slow

> down. We start learning to accept that we have to pace ourself, and

that we

> won't be at all the games, and we won't be at church each weekend and

we won't

> be the one to do Thanksgiving and we realize that we have to cancel

that lunch

> date. We don't like it-- but we do what we have to do.

>

> The silver lining-- we go in and out of all these states multiple

times

> over, and each time we re-enter where we've been before, we can choose

to take

> what we learned the last time we were there-- how to handle these

issues,

> again. And that's ok. It is ok that we keep looking for more answers

and a

> better idea on how to deal with what the future might bring.

>

> So-- ask the questions, and I'll try to put some more stuff in one

spot that

> says if this happens, then.... Rose, is it already in your folder????

>

> Blessings to us all,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

[Guest guest]

Tracie

what an awesome idea, you would be great at writhing a book! marla

,

There aren't any books

about neurosarcoidosis. FSR has brochures about sarc and cardiac sarc,

etc.

Sadly, they still

think that NS is 1/100,000 so why write a book.

Honestly, I am in the

process of putting together a book on dealing with NS and multi-system sarc,

with much of what I've shared with all of you, along with some sites and

articles that I've found helpful.

What is it that you

want in the way of info? How can we help. We have literally 1,000's

of posts with links to different articles, all of them available without cost

directly from the web.

Take care,

Tracie

NS Co-owner/moderator

See what's new at AOL.com and Make AOL Your

Homepage.