RE: Confused ??

September 14, 2003

Dear :

Have you ever had an MRI of your brain?...also, have you ever had a spinal tap?..those two tests could explain a lot...mention them to your doctor. Also, your prednisone may be too low for you right now if you are aching so much. Maybe you should also see a psychiatrist for some meds to help you through this difficult time. I know that it helps me. I am on Wellbutrin and Klonopin and take Xanax as needed.....I am sure others in the group take these types of meds as well. There is nothing wrong with needing help in this form. I am so sorry you feel so stuck, but I can totally relate to the same feeling. I read, sleep, and just try and keep my mind occupied....I do as much research as possible on this disease and medications....and research the best doctors around the country to go and see...where are you located exactly??

Hugs,

Stacie

September 14, 2003

You also need a CT of the brain if you havent already had one as well

September 14, 2003

Hi, . It was good to talk to you again. I'm just a few miles away, so

if someday you need to talk in person, maybe we could get together. Hope

tomorrow is better for you, and Dr. W can see you soon. You deserve the best

life has to offer.

Dee in Houston.

September 14, 2003

, they don't call this disease "suckoidosis" for nothing. Please know that you are not alone; even if we can't be with in body, there are people all over the world who are with you in spirit. Like , I planned to work until I was old & gray (well, old at least; I've been gray for years, but not quite ready to admit it). Now I'm 54, on temporary leave from work & trying to decide whether to try working part-time or what. At this very minute, I am sitting in my canvas recliner in my underwear & a t-shirt, because I was wearing satiny pj's that made me keep sliding out of the chair. I didn't have the energy to go up to my room for some other pants, so here we are! I know Quint & Ron are probably trying to erase the mental picture from their minds, but the point is, this is a strange disease that leads to strange behavior. Awhile back, someone compared the rarity of neurosarcoidosis with winning the lottery, except I don't think any of us have won the lottery. Well, I'm rambling again. But just close your eyes, breathe easily, and I guarantee that you will feel love and hugs coming to you in a soft, warm cyber blanket. Ramblin' Rose

Confused ??

Hi Everyone,

I don’t post much but I read the e-mail all the time. I am having a very diificult time right and I don’t know what to do. I don’t have anyone to talk to. This disease is very isolating. I'm on 17 1/3 mg of prednisone and it's making crazy. I know it is not

a lot but it seems to make depressed and psychotic. I saw my neuro last week because my double vision seems to be coming back and I've been having these heart palpitations and this general uncomfortable feeling in my left upper chest and heart area. My fingers and toes ache so badly. They did all the recommended blood work and found nothing. I'm going for a CT of the chest on Tues. I am thinking of applying for disability, but I don't know if I should. I mean - I'm I that sick? I know I can't work. I so sad. Nothing I planned for my life is working out. I feel stuck. I can't move forward, I can't move back. No one understands what I'm going through. Sometimes I see no reason for getting up in the morning. For what ? To take pills and geek on steroids. I don't know that to do. I feel trapped. I don't understand what God means by this. What I'm I suppose to do with this ? Anyway, I'm just a little scared because I have no control over this thing. I thying to fill out these disability papers and I have no idea what to tell these people. I should write... Life sucks, give me some money !

~~~~ *** ~~~ *** ~~~ *** ~~~~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 15, 2003

,

I am

so sorry to hear you are feeling this way, I wish I could take some of your

pain away. When I’m having a bad

day, I ask God to give me someone’s pain (as long as I’m in pain

why not) and pray that other’s are having a good day, I pray this for

you. We don’t the why’s in life

that is all part of the bigger plan I guess.

But so hard not to question. I feel if we carry our cross here on earth,

then heaven must be something really special.

I

wish I could help you, and if there if any way I can please let me know. But do know that I am praying for you.

Love

and prayers,

Marla

Confused ??

Hi

Everyone,

I

don’t post much but I read the e-mail all the time. I am having a

very diificult time right and I don’t know what to do. I

don’t have anyone to talk to. This disease is very isolating.

I'm on 17 1/3 mg of prednisone and it's making crazy. I know it is

not

a

lot but it seems to make depressed and psychotic. I saw my neuro last

week because my double vision seems to be coming back and I've been having

these heart palpitations and this general uncomfortable feeling in my

left upper chest and heart area. My fingers and toes ache so badly.

They did all the recommended blood work and found nothing. I'm going for

a CT of the chest on Tues. I am thinking of applying for disability, but

I don't know if I should. I mean - I'm I that sick? I know I can't

work. I so sad. Nothing I planned for my life is working out. I

feel stuck. I can't move forward, I can't move back. No one

understands what I'm going through. Sometimes I see no reason for getting

up in the morning. For what ? To take pills and geek on steroids. I don't

know that to do. I feel trapped. I don't understand what God

means by this. What I'm I suppose to do with this ? Anyway, I'm

just a little scared because I have no control over this thing. I thying

to fill out these disability papers and I have no idea what to tell these

people. I should write... Life sucks, give me some money !

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

~~~ *** ~~~~

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

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

September 15, 2003

Rose,

What a

great idea, if our odds are that (good??), maybe we should buy lottery tickets,

then we would have a way to pay for all that goes along with this “sukoidosis”!! Just a thought?