New to Group

May 13, 2001

Tiffani,

Welcome to the group!! :-)

Age: 34

Dx'd: early 1990s

Location: southeastern Vermont

Children: 1 four-legged furry one named Missy

Siblings: 3 sisters, 1 brother (I am the youngest)

Currently renting from mom, working for mom, and typing at home. I am

divorced and been with SO since 1997.

>From: jessandtiff@...

>Reply-To:

>To:

>Subject: New to group

>Date: Sat, 12 May 2001 18:41:16 -0000

>

>Hi, My name is Tiffani Hallan, I am 24 yeas oldl, I live in Kingsland

>Georgia and I've spent 5 long years trying to figure out what is

>wrong with me.. spent many months thinking it was all in my head,

>that the pain wasn't really there, after all, there weren't any

>outside signs, like abrasions or cuts, etc.. Several doctors later..

>I got my diagnosis last week by rheumatologist, Dr. Taba in

>ville, Fl.

>I've been reading all I can about FMS and going " wow! I have that "

>and seeing how so many of the things link together. Right now, pain

>is minimal. I quit my job due to the fatigue, like I have no energy.

>No vim or vigor!

>So far I have shooting pains in random legs/arms/joints/neck, I

>suffer bouts of diarrhea (not to gross anyone out!) I am constantly

>peeing, it seems which is the most annoying thing to me, even next to

>the aching/stabbing pain. I mean, when I have to go, I have to GO

>NOW! <sigh> But I'm learning to manage that. I have the tinnitus and

>I feel " wobbly " on occasion. Sometimes my whole body feels on fire

>and it is made worse when someone/something touches it. I have had

>Iritis. My eyes hurt when changing from lighting amounts or out in

>the bright sun.

>I am also starting to have trouble sleeping. Not so much falling

>asleep, but staying asleep. I wake up several times a night. Also I

>find myself clenching my jaw and scrunching up my shoulders and neck,

>rather than relaxing. So I wake up sore and tight and TIRED. I

>started on Elavil last night and it did seem to help. I just can't

>get comfortable. My ideal sleep situation would be weightless in

>space so nothing would have to touch me and I wouldn't have to keep

>re arranging my pillow!

>Anyway I hate coming in here and whine to people, but I know you all

>will wholly understand!

>On the positive side, I do groom dogs out of my house on occasion,

>those clients who just couldn't live without me. I also

>show/handle/breed Bichon Frise under the prefix " Finesse " (see my

>webpage on my signature below). I am relatively new to exhibiting

>dogs, but have 3 great mentors who have been guiding and helping me

>all along. When I am at the shows, I seem " free " from most

>symptoms.. or maybe I'm just all adrenaline and too busy to notice

>most of the time, either way, it is my passion and what drives me...

>next to my beloved hubby, Jessie and my mom as well.

>Jess and I have a little house with 8 dogs (small ones!) 2 cats with

>a swimming pool. My little slice of heaven

>Talk to you all later, thanks for allowing me to introduce my self.

>Tiffani Hallan

>jessandtiff@...

>www.thegourmetpooch.homestead.com/Jetsbichons.html

>

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May 13, 2001

Welcome Tiffani,

Sounds like you'll fit in around with the rest of us! I too have no energy

and am on the verge of having to quit my job due to lack of energy.

Darcy

October 8, 2003

Hi Glenda, Welcome to the group... I'm glad you've found us but sorry that you've had to... My name is and I have Neurosarcoidosis, but this term means sarcoidosis of the Central Nervous System, which can be of the Brain or the Spinal Cord...this is the from I have.. of the spinal cord.. which leaves me with the inability to stand but for a few min, then comes tremors and then comes the fall if I don't get to a sitting place before the crash... We all complain of different areas of the body because lots of us have had sarc for a long time and in many cases the disease has spread to other parts of our bodies causing pain in other places, which the term for that is systemic sarcoidosis..causing arthrithic pain or even sometimes worse, I also have sarcoid in my lungs, Lacrimal glands, sinuses, salivary glands, and my Right knee.. this is systemic with this many areas affected... I hope I've answered your question...

And once again welcome to the group...

Big Hugs,

-- New to Group

I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~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~~~~ *** ~~~ *** ~~~ *** ~~~~

October 9, 2003

Glenda,

You

will probably get more on this from other¡Çs but Neuro, means the neurological system which stems from the

brain. The brain is the ¡Èmotor¡É

for our neuro system, the spine is the transport

system, and it continues to branch out form there. Does that make sense? So ¡Èbrain¡É sarc

is Neruo Sarc. I have left side pain, paralysis, etc. and it

all stems form my brain, even though the pain may be in my foot. I hope this is helpful, maybe some one else

will explain it better. But be sure to

ask any and all questions you have.

Love

and Prayers to you and all,

Marla

New to

Group

I'm new to this group and have been

reading different emails re neurosarcoidosis. I was dx June 2002 after l

1/2 years of symptoms (biopsy). My brain is the only part of my body

effected with granulomas. I am confused with the term neurosarc.

Apparently it is not in the brain only but includes the body. Can

anyone help me to understand the difference. Would like to hear from

brain sarc people also. Thanks, Glenda

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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

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

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October 9, 2003

Hi, Glenda. Welcome to the group! I see several people have already responded to your letter, but I'll put my 2 cents in anyway. Neurosarc is any neurologic involvement; that can include the brain itself, the 12 cranial nerves (for hearing, smell, etc.), the spinal column, and peripheral nerves (out in the body). I have small nerve fiber neuropathy, which causes numbness & burning in my feet, and recently on the outside of my right thigh. I also have bilateral hearing loss (8th cranial nerves), have had 2 facial palsies (7th cranial nerve), and trigeminal pain (5th nerve). I have memory loss, tremors, swallowing problems & probably other stuff that I can't remember right now! So, neurosarcoidosis covers a wide range of symptoms, which is one reason it is difficult to diagnose. Good luck! Rose from Indiana

New to Group

I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~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~~~~ *** ~~~ *** ~~~ *** ~~~~

October 9, 2003

Hi ,

I cann't believe your description about standing or the lack of the ability to stand. This is me to a tee. My neuro believes it is because of migranes?

Who dx you? My MRI doesn't show anything except a lump in the right front lobe of my brain but it is so small that they don't give a damn.

My right knee is extremely bad. Bone is rubbing on bone as apparently my cartilage is worn away. I see an orthopedic rehab doctor at the end of the month and my GP said than maybe he can give me a brace for support and to be able to walk. How do you get around?

I had to retire early (54) but it was the best thing I could have done for myself. Besides cooking for my son's wedding, I have organized my closets and kitchen cupboards and now hope to start painting again.

Thank you for sharing it makes such a difference to hear that others have the same symptoms. Guess I'm not so weird afterall!

Love Joanne in Toronto

wrote:

Hi Glenda, Welcome to the group... I'm glad you've found us but sorry that you've had to... My name is and I have Neurosarcoidosis, but this term means sarcoidosis of the Central Nervous System, which can be of the Brain or the Spinal Cord...this is the from I have.. of the spinal cord.. which leaves me with the inability to stand but for a few min, then comes tremors and then comes the fall if I don't get to a sitting place before the crash... We all complain of different areas of the body because lots of us have had sarc for a long time and in many cases the disease has spread to other parts of our bodies causing pain in other places, which the term for that is systemic sarcoidosis..causing arthrithic pain or even sometimes worse, I also have sarcoid in my lungs, Lacrimal glands, sinuses, salivary glands, and my Right knee.. this is systemic with this many areas affected... I hope I've answered your question...

And once again welcome to the group...

Big Hugs,

-- New to Group

I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~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~~~~ *** ~~~ *** ~~~ *** ~~~~

October 9, 2003

Hi Joanna, seems like my sarcoid affects the spinal cord and not the brain... according to my Neuro/Immunologist...He just watched me walk and with the history of lung and lymph node sardcoid.. he knew exactly what it was.. also my ace level got up to 200 along with my sed rate up to 90 and my crp which is suppose to be below 5 mine was 38... I had to demand a gallium scan which is where they inject a radioactive dye and you go back 3 days in a row to see if the dye reacts anywhere showing inflammation and of course it did.. I can't do much these days at all, I had the bright Idea of going to the grocery store last week by myself.. and nearly colapsed twice before I could get to the car... I had to have help and a dear man that I've known all my life helped me with my groceries, and got me out to the car... Ususally my son does the groceries but he had company coming and we had noting to eat, what we will try for our kids... but it won't happen again...I use a quad cane, and if I have to go the the doctor's office I have a scooter that I ride which has been my lifesaver and has made me semimobile.. otherwise I would be totally homebound....

Its good to hear from you Joanne from Toronto..Welcome back...

Hugs,

-- New to Group

I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~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~~~~ *** ~~~ *** ~~~ *** ~~~~

October 12, 2003

%

New to Group

I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~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~~~~ *** ~~~ *** ~~~ *** ~~~~

October 15, 2003

Hi Glenda,My name is . I am a brain sarc only person also. I had a skull base lesion 2 years ago that recently returned. I am currently on 17 1/2 mg of prednisone. I suffered with double vision as my initial diag.

- New to Group

I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~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~~~~ *** ~~~ *** ~~~ *** ~~~~

October 15, 2003

Hi Glenda welcome to our loving family. I also have sarc in

the brain I have29yrs of sarc and 9yrs of neurosarc.In my

38yrs with the sarc monster I have had aseptic meningitis -2

strokes-6 and countless grand mal seizures deaf in my left

ear and blind in my right eye and right now I am getting

over a bad case of anterior uveitis . So since I can see

again I will be posting more

Quint

October 15, 2003

Hi Glenda,

I too am a brain sarc person,,,and it started in my body,,,I was

first dx'd in 1989. I am sorry to hear that you have it,,,but glad

that you have found this group, there are some really great ppl here.

Lynne

> Hi Glenda,

>

> My name is . I am a brain sarc only person also. I had a

skull base lesion 2 years ago that recently returned. I am currently

on 17 1/2 mg of prednisone. I suffered with double vision as my

initial diag.

>

> - New to Group

>

> I'm new to this group and have been reading different emails re

neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms

(biopsy). My brain is the only part of my body effected with

granulomas. I am confused with the term neurosarc. Apparently it is

not in the brain only but includes the body. Can anyone help me to

understand the difference. Would like to hear from brain sarc

people also. Thanks, Glenda

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

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

>

> Members 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/links

>

> Personal Complaints or problems:-

> Please email the moderators

> mailto: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/join

>

> To 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

>

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

>

October 16, 2003

Missed you, Quint. I always enjoy your posts. Rose

Re: New to Group

> Hi Glenda welcome to our loving family. I also have sarc in

> the brain I have29yrs of sarc and 9yrs of neurosarc.In my

> 38yrs with the sarc monster I have had aseptic meningitis -2

> strokes-6 and countless grand mal seizures deaf in my left

> ear and blind in my right eye and right now I am getting

> over a bad case of anterior uveitis . So since I can see

> again I will be posting more

> Quint

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

> Message Archives and Digest Attachment Pictures:-

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

>

> Members 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/links

>

> Personal Complaints or problems:-

> Please email the moderators

> mailto: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/join

>

> To 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

>

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

>

October 18, 2003

Hi Glenda,

>>My neuro says that it can spread from the body to the brain but isn't

likely to go from brain to body.

Firstly your neuro is wrong it can go from the Brain to the Body - Rare yes

- but it can happen.

You can also just have " Pure Neurosarc " without any other organ involvement

at all.

Secondly, Welcome!

Here there are many people with many different types of sarc, and we will

all do our best to answer any questions you have, but I want to stress the

point, that you are not alone in your battle. We are here for you. Vent

anytime you need. About anypart of being sick. It's hard to live with, and I

guess we know alot about each other lol.

Please know no post is ever too long or too short, and we are always here to

support you.

I'm sorry you're sick, but I hope being able to lean on us helps you through

the tough times.

Love isha

-- Re: New to Group

%

----- Original Message -----

Thank you, Rose and , for responding to my e mail. You, Rose, are the

only person I know of who has brain sarc. My neuro says that it can spread

from the body to the brain but isn't likely to go from brain to body. Has

that been your experience?

Let me share my story. My symptoms came on all of a sudden spring 2001. I

was painting a room and became dizzy while upon a ladder. Then I had LOUD noise

in my ear similiar to the ocean surf and eventually it became so loud just like

a hair blow dryer constantly going in my ear. The consistently odd thing about

my symptoms were they were cyclically consistent. I would have problems with my

right ear and then it would move to my left while my right ear cleared up. I had

balance problems, some visual, each symptom lasting approx one month and then on

to something else strange and odd. My neuro did not want me to have a biopsy at

that time because I was healthy otherwise and because of the location no dr

wanted to do it. The risks far outweighed the benefits. 50 or 60% of the time

brain biospies are inconclusive. So we waited with MRI's every 3 mos.

Eventually I started getting headaches and the inflamation in my brain increased

and spread to a place where it would be easy to biospy. Dx was neurosarcoidosis

and I started 60 mg. of prednisone. I know lots of people have problems with

pred. but I loved it. First of all my symptoms dissapeared except for the total

hearing loss in my left ear, right ear is excellent. I slowly tapered off for

nine mos. At 6 mos. (down to 20 mg) I felt some symptoms, the odd ones where

I'm " off " , had an MRI which showed it was almost all gone so continued tapering

pred. Sometimes my symptoms don't coincide with my MRI's. I'll be feeling

pretty much symptom free and my MRI's show increased change and I can feel, know

something is not right and my MRI's are clearing up. Go figure. In March of

this year my MRI's showed increase so my neuro raised my pred to 20 mg, the

amount I was on in Dec. when my MRI showed marked improvement, almost gone. I

had weaned myself to 2 1/2 mg. every other day, felt great so was surprised with

the test results. I'm now on 20 mg again and have had no change in the next 2

MRI's but last one in Sept. showed the same size only more has shifted to the

left dura part and less on the right. There was some talk of changing meds,

some chemo drug or anti rejection drug but decided to stay on pred and give it

some more time to work. I am having side effects from pred now but am not

always sure what is pred related and what is sarc related. So that's my story.

Would love to hear from more brain sarc people. I understand we are rare.

Glenda from Oregon

October 18, 2003