Hello Everybody.........Introducing myself.

[Guest guest]

Hi,

My name is & I just found your group last night & thought I

would introduce myself. I would also love to get to know you too.

I a 54 year old female with a brand new grandson & a wicked sense of

humor. Currently, I am not working & am on disability. Good

news...I don't miss the stress of my last job & get to take care of

my new grandson when his Mom is working & the bad news...it doesn't

pay very well. LOL

Now to the fun stuff, I was diagnosed with MS about 5 years ago but

my Neurologist kept saying I wasn't a typical case (no surprise

there). Anyway, after years of sending me to different doctors, he

finally sent me to a Rheumatologist. He diagnosed me with Systemic

Sarcoidosis because I seem to have had lesions or cysts in my brain,

eyes, lungs, kidneys, etc.

Most of what I read on the internet kind of made it sound like a

pretty benign disease so when I didn't like the side effects of the

drugs, I just stopped. When I went back to the doctor, he gave me a

pretty long lecture about how serious it was & that he didn't give

the diagnoses out lightly & I really needed the drugs. Especially

because I had so much steriods when they thought this was MS, my body

is in pretty bad shape.

Sorry I was so long winded but I am hoping to make some new friends &

learn more about this disease, the good, bad & ugly of it. I am

really confused about Sarcoidosis & I need a little motivation to

stay on the Methotrexate & Plaquanil.

Thanks for reading my long post.

[Guest guest]

Hi ,

And welcome,

you have found a wonderful, supportive family of Sarcoidions, I too am on Plaquanil

and Methotrexate, it was the only way I was able to get off steroids. Anyway welcome.

Marla

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Saturday, July 21, 2007 9:43

AM

To: Neurosarcoidosis

Subject: Hello

Everybody.........Introducing myself.

Hi,

My name is & I just found your group last night & thought I

would introduce myself. I would also love to get to know you too.

I a 54 year old female with a brand new grandson & a wicked sense of

humor. Currently, I am not working & am on disability. Good

news...I don't miss the stress of my last job & get to take care of

my new grandson when his Mom is working & the bad news...it doesn't

pay very well. LOL

Now to the fun stuff, I was diagnosed with MS about 5 years ago but

my Neurologist kept saying I wasn't a typical case (no surprise

there). Anyway, after years of sending me to different doctors, he

finally sent me to a Rheumatologist. He diagnosed me with Systemic

Sarcoidosis because I seem to have had lesions or cysts in my brain,

eyes, lungs, kidneys, etc.

Most of what I read on the internet kind of made it sound like a

pretty benign disease so when I didn't like the side effects of the

drugs, I just stopped. When I went back to the doctor, he gave me a

pretty long lecture about how serious it was & that he didn't give

the diagnoses out lightly & I really needed the drugs. Especially

because I had so much steriods when they thought this was MS, my body

is in pretty bad shape.

Sorry I was so long winded but I am hoping to make some new friends &

learn more about this disease, the good, bad & ugly of it. I am

really confused about Sarcoidosis & I need a little motivation to

stay on the Methotrexate & Plaquanil.

Thanks for reading my long post.

[Guest guest]

Hi ,

Welcome to the family. We're almost 500 strong, and all learning and sharing as we go. Many of us have had sarcoidosis for many years. I'm a 17 yr person myself, fully systemic - lungs,muscles, eyes, liver, joints, and on and on.

Many of us have had the MS diagnosis, and with either one, you get the steroids! Not a pretty choice.

But hey, if we all get our hair permed in the 70's fro-- then paint lines on our round moon faces due to the steroids-- we could rename ourself as the basketball heads.

Rose is the one with the sense of humor-- the rest of us are really serious! Just scan the pictures and you'll know Rose, she's the one with the ice bra on her head, and threats of leopardskin undies.

I'm not in the pictures, yet-- but I don't look like Rose.

It sounds like you've got a Rheumi with a brain, which is better than many of us, heck, most of our Neurologists need more than one of themselves to get a collective brain. But that's life when the goal of the exam is to touch their nose and then your finger or touch their finger and then your nose. Personally, it's been awhile since I've had to practice for that exam, but we used to have a theme song, something about grabbing a booger and slinging it at their noses-- I don't remember exactly, but it was funny at the time!

Rose-- you know it well, sing it for us!!!!!!!!!!1

Anyway, we do answer questions, sometimes seriously, sometimes not. But we're here to share the joy, the frustrations, hold hearts and hands (please wash first if you're practicing the nose test.)

Blessings,

Tracie

NS Co-owner/moderator

PS. Hey guys, I'm back on prednisone, and I'm flying high. Please come and pull me back down to earth- Get a sneak peek of the all-new AOL.com.

[Guest guest]

Welcome.... I too have been diagnosed with MS and Sarc; the

sarc is in my lungs and eyes and the MS, my brain and spinal cord. The

sarc was diagnosed by biposy in 1995 in my lungs and the MS in 2002

when my legs just stopped working.

I currently take a cocktail of Methotrexate, Prednisone and a

SoluMedrol injection. Also, we can't forget the PROZAC, Fosamax and I

was on a Avonex injection, but that was discontinued last year.

Liprinosil for my BP, folic acid, daily Tylenol for pain, hell I will

take it all. Maybe that is why I am so spaced out.

I am not a doctor, but the folks at Cleveland Clinic have shown me the

difference between a granuloma and a lesion - hell they look the same

to me! Neurosarcoidosis/MS - " whatever " I just know I am sick, but here

is the kicker, each day I can get up and function I am glad. So

get ready for the ride of a lifetime. Hang on, ride and enjoy

the folks in this group, they are a hoot.

Madonna

[Guest guest]

Madonna, I wouldn't mind knowing the difference between a granuloma and a lesion. Come on...share. hugs S.madonna4ncd wrote: Welcome.... I too have been diagnosed with MS and Sarc; the sarc is in my lungs and eyes and the MS, my brain and spinal cord. The sarc was diagnosed by biposy in 1995 in my lungs and the MS in 2002

when my legs just stopped working. I currently take a cocktail of Methotrexate, Prednisone and a SoluMedrol injection. Also, we can't forget the PROZAC, Fosamax and I was on a Avonex injection, but that was discontinued last year. Liprinosil for my BP, folic acid, daily Tylenol for pain, hell I will take it all. Maybe that is why I am so spaced out. I am not a doctor, but the folks at Cleveland Clinic have shown me the difference between a granuloma and a lesion - hell they look the same to me! Neurosarcoidosis/MS - "whatever" I just know I am sick, but here is the kicker, each day I can get up and function I am glad. So get ready for the ride of a lifetime. Hang on, ride and enjoy the folks in this group, they are a hoot. Madonna

Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV.

[Guest guest]

Hi Tracie,

Thank you for the warm welcome & I am looking forward to getting to

know you & the rest of the family!

You are right, I have a very good Rheumy & an awesome Neuro. My

neuro has been trying to find the reason behind all the symptoms for

years. He never quite liked the MS diagnoses. My Internist, on the

other hand, doesn't really believe in the systemic sarcoidosis

diagnoses. Which as a person who LOVES to live in the land of

denial, was fine by me.

I feel like a steroid junkie. Before I was diagnosed with

sarcoidosis, I used to threaten to run off to Mexico & get a big bag

full. I've even gotten used to the red, round moon face. My

daughter says I look like an embarrassed " smilie " face. LOL Now, I

have big prescription from the Rheumy to use at my discretion.

Oh....that's dangerous!

I'm rambling so I'll sign off now....thanks again.

>

> Hi ,

> Welcome to the family. We're almost 500 strong, and all learning

and

> sharing as we go. Many of us have had sarcoidosis for many

years. I'm a 17 yr

> person myself, fully systemic - lungs,muscles, eyes, liver,

joints, and on and

> on.

> Many of us have had the MS diagnosis, and with either one, you get

the

> steroids! Not a pretty choice.

> But hey, if we all get our hair permed in the 70's fro-- then

paint lines on

> our round moon faces due to the steroids-- we could rename ourself

as the

> basketball heads.

> Rose is the one with the sense of humor-- the rest of us are

really serious!

> Just scan the pictures and you'll know Rose, she's the one with

the ice bra

> on her head, and threats of leopardskin undies.

> I'm not in the pictures, yet-- but I don't look like Rose.

> It sounds like you've got a Rheumi with a brain, which is better

than many

> of us, heck, most of our Neurologists need more than one of

themselves to get

> a collective brain. But that's life when the goal of the exam is

to touch

> their nose and then your finger or touch their finger and then

your nose.

> Personally, it's been awhile since I've had to practice for that

exam, but we

> used to have a theme song, something about grabbing a booger and

slinging it at

> their noses-- I don't remember exactly, but it was funny at the

time!

> Rose-- you know it well, sing it for us!!!!!!!!!!1

>

> Anyway, we do answer questions, sometimes seriously, sometimes

not. But

> we're here to share the joy, the frustrations, hold hearts and

hands (please

> wash first if you're practicing the nose test.)

>

> Blessings,

> Tracie

> NS Co-owner/moderator

>

> PS. Hey guys, I'm back on prednisone, and I'm flying high.

Please come and

> pull me back down to earth-

>

>

>

> ************************************** Get a sneak peek of the all-

new AOL at

> http://discover.aol.com/memed/aolcom30tour

>

[Guest guest]

Hi Madonna.....

Thanks for the welcome!

So you can have both?! Yhat's been the big question here. I have

two doctors that say systemic or neuro sarcoid, one that says just MS

& one that says.....I don't know. I laughed when you

said " whatever " , that's about what I say I've got, the " whatever "

disease (except my langauage is a little more colorful). I'm just

glad they aren't telling me it's " mentalpause " !

So you take MTX & steriods. I'm a little afraid to do that because

my bones are going quick, lots of IVSM over the last 5 years.

But, I feel so much better when I'm taking them, I'd like to stay on

them until the Plaquanil takes hold (if I ever get around to taking

it).

I take a lot of drugs too. Cymbalta (couldn't live without),

Metformin, Cozaar for BP, Keppra for seizures, Lipitor & Nexium for

the upset stomach that comes with all those drugs. I guess you could

all that down to better living through modern chemistry!

I'm gald that I can get up each day too. Most of the time with a

pretty good attitude. Life is still fun!

Thanks again & looking forward to getting to know you & the rest of

the group better.

>

> Welcome.... I too have been diagnosed with MS and Sarc;

the

> sarc is in my lungs and eyes and the MS, my brain and spinal cord.

The

> sarc was diagnosed by biposy in 1995 in my lungs and the MS in 2002

> when my legs just stopped working.

>

> I currently take a cocktail of Methotrexate, Prednisone and a

> SoluMedrol injection. Also, we can't forget the PROZAC, Fosamax and

I

> was on a Avonex injection, but that was discontinued last year.

> Liprinosil for my BP, folic acid, daily Tylenol for pain, hell I

will

> take it all. Maybe that is why I am so spaced out.

>

> I am not a doctor, but the folks at Cleveland Clinic have shown me

the

> difference between a granuloma and a lesion - hell they look the

same

> to me! Neurosarcoidosis/MS - " whatever " I just know I am sick, but

here

> is the kicker, each day I can get up and function I am glad. So

> get ready for the ride of a lifetime. Hang on, ride and

enjoy

> the folks in this group, they are a hoot.

>

> Madonna

>

[Guest guest]

Yes, it is very likely that you will have more than one auto-immune disease. Sarcoidosis and diabetes, or Rheumatoid Arthritis or Sjorgens or MS. And the list goes on.

As far as our mentality-- well damn, we all know the joke about the three letters infront of many illnesses.

Men tal illness

Men opause

Men eastration

Wo men

Need I say more. (I sure hope not, on account of I can't think of the others.) LOL~Get a sneak peek of the all-new AOL.com.

[Guest guest]

I'm a steroid junkie too. They're weaning me off of it and I don't walk as well without it. Having a bad eye and brain day. Make that week. The computer is making me sleepy. Just like when I was at work. LOL I'm still here but way behind in mail & falling asleep. Maybe later I can catch up. Maybe I overdid yesterday but it was great to be outside and around other people.grannylunatic@...

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