neurosarcoidosis,

[Guest guest]

Hi there im new to this group, last year march 2007, is when my symptoms

started, i had a

blind spot in my left eye, which happened at a click of a finger, i went to my

doctor how

could not see anything wrong, she referred me to an eye specialist who look at

my eye and couldn't she anything wrong, he then referred me for an MRI scan,

anyway while i was waiting

for an appointment, 2 weeks later my health deteriorated in a space of a week, i

couldn't do

anything and i felt weak, on the Friday i asked my mum to take me to the

hospital, at the hospital they gave me a blood test, which showed that the

sodium in my blood was low, i

told them about my eye and they admitted me. the next day i had an MRI scan

which showed

that the hypothalamus gland in my brain and the optic nerve was inflammed, they

started me

on anhigh dose of steroids via iv, the i stared taking the steroids orally, i

was in hospital for 3

weeks having loads of test, i had blood test's everyday, MRI scans, pet scan,

CT. scan, gallium scan, and had to give urine samples, the neurologist told me

the i have a condition

called neurosarcoidosis i was very scared as i had never heard of such a

condition, Im still on

steroids a year later, i see my neurologist every 3 months, Im 22 years old with

a 2 year old

son, i've put five stone in weight due to the steroids. any body in the same

boat as me please email me i would love to hear from you xxxxxx

[Guest guest]

Well, the good news is that you've found over 500 people in the same boat!  So

you are no longer alone. 

Is your sarcoidosis advancing still?  Do you have the arthritis or joint/bone

pain that can come with this?  How are your lungs? 

Steroids are the first line of action, but after this long, it's time to start

looking at something that will replace them for long-term use.  There are

several choices, and a combination taylored to your needs may be a better

choice.

Jump in, and I know that you'll get lots of people talking with you via the

group.  I'm sorry you had to find us, but glad you did.  We all need the support

and knowledge that a group can share!

Blessings,

Tracie

NS Co-owner/moderator

neurosarcoidosis,

Hi there im new to this group, last year march 2007, is when my symptoms

started, i had a

blind spot in my left eye, which happened at a click of a finger, i went to my

doctor how

could not see anything wrong, she referred me to an eye specialist who look at

my eye and couldn't she anything wrong, he then referred me for an MRI scan,

anyway while i was waiting

for an appointment, 2 weeks later my health deteriorated in a space of a week, i

couldn't do

anything and i felt weak, on the Friday i asked my mum to take me to the

hospital, at the hospital they gave me a blood test, which showed that the

sodium in my blood was low, i

told them about my eye and they admitted me. the next day i had an MRI scan

which showed

that the hypothalamus gland in my brain and the optic nerve was inflammed, they

started me

on anhigh dose of steroids via iv, the i stared taking the steroids orally, i

was in hospital for 3

weeks having loads of test, i had blood test's everyday, MRI scans, pet scan,

CT. scan, gallium scan, and had to give urine samples, the neurologist told me

the i have a condition

called neurosarcoidosis i was very scared as i had never heard of such a

condition, Im still on

steroids a year later, i see my neurologist every 3 months, Im 22 years old with

a 2 year old

son, i've put five stone in weight due to the steroids. any body in the same

boat as me please email me i would love to hear from you xxxxxx

------------------------------------

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[Guest guest]

Sorry to hear that you are dealing with so much esp. with a young

child to care for. I've been on prednisone since Oct 2007 and now

weigh 40 lbs more than when I started. How does that compare

to " stones " My neurologist is trying to wean me off the pred and has

put me on Cellcept. He says that I probably won't start losing some

of this weight until I get down to 20mg pred. I can't wait and just

hope that decreasing the dose won't bring my symptoms back.

Hopefully, the Cellcept will take care of that.

Best of luck,

Sharon

Cary, NC

>

> Hi there im new to this group, last year march 2007, is when my

symptoms started, i had a

> blind spot in my left eye, which happened at a click of a finger, i

went to my doctor how

> could not see anything wrong, she referred me to an eye specialist

who look at my eye and couldn't she anything wrong, he then referred

me for an MRI scan, anyway while i was waiting

> for an appointment, 2 weeks later my health deteriorated in a space

of a week, i couldn't do

> anything and i felt weak, on the Friday i asked my mum to take me

to the hospital, at the hospital they gave me a blood test, which

showed that the sodium in my blood was low, i

> told them about my eye and they admitted me. the next day i had an

MRI scan which showed

> that the hypothalamus gland in my brain and the optic nerve was

inflammed, they started me

> on anhigh dose of steroids via iv, the i stared taking the steroids

orally, i was in hospital for 3

> weeks having loads of test, i had blood test's everyday, MRI scans,

pet scan, CT. scan, gallium scan, and had to give urine samples, the

neurologist told me the i have a condition

> called neurosarcoidosis i was very scared as i had never heard of

such a condition, Im still on

> steroids a year later, i see my neurologist every 3 months, Im 22

years old with a 2 year old

> son, i've put five stone in weight due to the steroids. any body in

the same boat as me please email me i would love to hear from you

xxxxxx

>

[Guest guest]

Cherisse,

I'm a little behind, but

want to welcome you to this wonderful family. We are all sick, different

symptoms and sometime the same, so we do know what you are going through, you

will find many helpful people, much support, and a loving family of

neurosarcoids!

I was diagnosed with

Sarcoid 14 years ago, and with neuro about 5 years ago, I have not had problems

with my eyes, and I was on Steroids for 3 years, made me a little crazy and yes

gained at ton of weight, then I was put on Methotrexate and was able to get off

the steroids, and I was doing pretty good until last Fall, then the neuro

flared again, and I am fighting our insurance company to pay for Remicade which

is the drug my doctor wants me on, I've been fighting since last fall, my

symptoms are getting worse, my legs weaker every day, and unable to walk very

far, find I am using my wheelchair more and more. Like I said we are all

dealing with different symptoms, and we welcome you, Marla

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of cherisse_simon

Sent: Friday, May 16, 2008 11:38

AM

To:

Neurosarcoidosis

Subject:

neurosarcoidosis,

Hi there im new to this group, last year march 2007,

is when my symptoms started, i had a

blind spot in my left eye, which happened at a click of a finger, i went to my

doctor how

could not see anything wrong, she referred me to an eye specialist who look at

my eye and couldn't she anything wrong, he then referred me for an MRI scan,

anyway while i was waiting

for an appointment, 2 weeks later my health deteriorated in a space of a week,

i couldn't do

anything and i felt weak, on the Friday i asked my mum to take me to the

hospital, at the hospital they gave me a blood test, which showed that the

sodium in my blood was low, i

told them about my eye and they admitted me. the next day i had an MRI scan

which showed

that the hypothalamus gland in my brain and the optic nerve was inflammed, they

started me

on anhigh dose of steroids via iv, the i stared taking the steroids orally, i

was in hospital for 3

weeks having loads of test, i had blood test's everyday, MRI scans, pet scan,

CT. scan, gallium scan, and had to give urine samples, the neurologist told me

the i have a condition

called neurosarcoidosis i was very scared as i had never heard of such a

condition, Im still on

steroids a year later, i see my neurologist every 3 months, Im 22 years old

with a 2 year old

son, i've put five stone in weight due to the steroids. any body in the same

boat as me please email me i would love to hear from you xxxxxx

[Guest guest]

Thanks for the welcome, since i've joined the group, i don't feel alone anymore, and i know im not the only one going through something like this, its very comforting.xxxxxxxxxxxxxxxx

neurosarcoidosis,

 

Hi there im new to this group, last year march 2007,

is when my symptoms started, i had a

blind spot in my left eye, which happened at a click of a finger, i went to my

doctor how

could not see anything wrong, she referred me to an eye specialist who look at

my eye and couldn't she anything wrong, he then referred me for an MRI scan,

anyway while i was waiting

for an appointment, 2 weeks later my health deteriorated in a space of a week,

i couldn't do

anything and i felt weak, on the Friday i asked my mum to take me to the

hospital, at the hospital they gave me a blood test, which showed that the

sodium in my blood was low, i

told them about my eye and they admitted me. the next day i had an MRI scan

which showed

that the hypothalamus gland in my brain and the optic nerve was inflammed, they

started me

on anhigh dose of steroids via iv, the i stared taking the steroids orally, i

was in hospital for 3

weeks having loads of test, i had blood test's everyday, MRI scans, pet scan,

CT. scan, gallium scan, and had to give urine samples, the neurologist told me

the i have a condition

called neurosarcoidosis i was very scared as i had never heard of such a

condition, Im still on

steroids a year later, i see my neurologist every 3 months, Im 22 years old

with a 2 year old

son, i've put five stone in weight due to the steroids. any body in the same

boat as me please email me i would love to hear from you xxxxxx

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