Re: neurosarcoidosis diagnosis

[Guest guest]

Hi a, welcome to the group.. Honey.. You need to get to an opthamologist as soon as possible...and have your eyes checkd... Sarc can run rampant with your eyes.. and can cause permanent damage if not taken care of immediately..

Hugs,

[Guest guest]

PAULA,

HI MY NAME IS NICOLE. AKA CARROTS OR THE BABY ON THE LIST. I HAD THE SAME

PROBLEMS FOUR, ALMOST FIVE YEARS AGO WHEN I WAS 16. THE PAIN WAS IN MY LEFT

EYE AND EVENTUALLY I LOST MY VISION. GOOD THING U CAUGHT IT EARLY. THE

FIRST THING U NEED TO ADJUST TO IS LISTENING O SO CAREFULLY TO UR BODY.

WELCOME TO THE FAMILY. THERE ARE MANY FOLKS HERE WITH MANY PROBLEMS AND

MEDS. WE ALL HAVE SARC, THAS WHY WE ARE HERE. U ARE MORE THAN WELCOME TO

VENT, CRY , CUSS , STOMP AND SCREAM. THIS IS THE ROOM FOR IT. TAKE CARE.

NICOLE

>From: Pkcjbc@...

>Reply-To: Neurosarcoidosis

>To: Neurosarcoidosis

>Subject: neurosarcoidosis diagnosis

>Date: Wed, 7 Jan 2004 12:26:42 EST

>

>Hi! My name is a and 11months ago started on what has been the

>roller-coaster ride of my life. I awoke in the AM to go to work with eye

>pain in both

>eyes whenever I moved my eyes. Long story short, over the next few days

>the

>pain became worse and eventually my vision decreased. After lumbar

>punctures,

>IV steroids, MRI's , the usual which were all normal I was diagoised with

>Devics Syndrome, until my most current ACE level was looked at again, then

>the

>diagnosis was changed to Neurosarcoidosis. I have never been able to be

>off

>Prednisone since this all started, after I am tapered off my vision goes.

>I am

>currently taking 40mg daily and 12.5 mg of methotrexate once weekly and my

>vision has diminished once while still on Prednisone. 5 days of IV 1 Gram

>daily

>then was OK. Today I woke with eye pain which is the way my vision loss

>starts

>and am still taking 40mg daily. I saw a doctor in OKlahoma a couple of

>weeks

>ago who says he believes I have neurosarcoidosis and Devics both, ever

>heard

>of this? I also am seeing an immunologist in Chicago next month, my

>neurologist says he has not seen neurosarcoidosis and is unsure as to the

>best way to

>treat it, but, says I need to get off of steroids. I guess my question is,

>HELP! any suggestions? I noticed in one of the E-mails I received that

>there

>is a risk of brain damage with this disease, it makes sense being a CNS

>disease but, I had never heard this. I would appreciate any info. you

>could

>provide.

> Thanks, a Pkcjbc@...

_________________________________________________________________

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[Guest guest]

PAULA,

HI MY NAME IS NICOLE. AKA CARROTS OR THE BABY ON THE LIST. I HAD THE SAME

PROBLEMS FOUR, ALMOST FIVE YEARS AGO WHEN I WAS 16. THE PAIN WAS IN MY LEFT

EYE AND EVENTUALLY I LOST MY VISION. GOOD THING U CAUGHT IT EARLY. THE

FIRST THING U NEED TO ADJUST TO IS LISTENING O SO CAREFULLY TO UR BODY.

WELCOME TO THE FAMILY. THERE ARE MANY FOLKS HERE WITH MANY PROBLEMS AND

MEDS. WE ALL HAVE SARC, THAS WHY WE ARE HERE. U ARE MORE THAN WELCOME TO

VENT, CRY , CUSS , STOMP AND SCREAM. THIS IS THE ROOM FOR IT. TAKE CARE.

NICOLE

>From: Pkcjbc@...

>Reply-To: Neurosarcoidosis

>To: Neurosarcoidosis

>Subject: neurosarcoidosis diagnosis

>Date: Wed, 7 Jan 2004 12:26:42 EST

>

>Hi! My name is a and 11months ago started on what has been the

>roller-coaster ride of my life. I awoke in the AM to go to work with eye

>pain in both

>eyes whenever I moved my eyes. Long story short, over the next few days

>the

>pain became worse and eventually my vision decreased. After lumbar

>punctures,

>IV steroids, MRI's , the usual which were all normal I was diagoised with

>Devics Syndrome, until my most current ACE level was looked at again, then

>the

>diagnosis was changed to Neurosarcoidosis. I have never been able to be

>off

>Prednisone since this all started, after I am tapered off my vision goes.

>I am

>currently taking 40mg daily and 12.5 mg of methotrexate once weekly and my

>vision has diminished once while still on Prednisone. 5 days of IV 1 Gram

>daily

>then was OK. Today I woke with eye pain which is the way my vision loss

>starts

>and am still taking 40mg daily. I saw a doctor in OKlahoma a couple of

>weeks

>ago who says he believes I have neurosarcoidosis and Devics both, ever

>heard

>of this? I also am seeing an immunologist in Chicago next month, my

>neurologist says he has not seen neurosarcoidosis and is unsure as to the

>best way to

>treat it, but, says I need to get off of steroids. I guess my question is,

>HELP! any suggestions? I noticed in one of the E-mails I received that

>there

>is a risk of brain damage with this disease, it makes sense being a CNS

>disease but, I had never heard this. I would appreciate any info. you

>could

>provide.

> Thanks, a Pkcjbc@...

_________________________________________________________________

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[Guest guest]

Faith makes all things possible,Love makes it easy!

Janjanbovi@...

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a,

Welcome to the group. Here we are one big family of all different forms of sarc.

Sounds like you do need to see an opthalmologist as has suggested cause sarc does indeed love to mess with our eyes, so please get into one as soon as possible.

I am so sorry you are sick, but so glad you found us. This is a great support group you should make a lot of friends here.

Much compassion and prayers,

Jan

~~God created us with an overwhelming desire to soar.....He designed us to be tremendously productive and "to mount up with wings like eagles," realistically dreaming of what He can do with "OUR" potential!!!!!........ Carol Kent

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[Guest guest]

Hi a welcome to our loving & helpful family.My name is

Quint I have been on that roller coaster ride it

started in 65'. one thing I can tell you is get your

eyes checked ASAP.If your doc is moving to slow find

another one.My eye problems started in 71' doc said I had

anterior uveitis.my doc did a biopsy of my lymph node

came back + for sarcoidosis.so now we have a

dx anterior uveiitis due to sarcoidosis my eye doc

was very good with my eyes but my pcp was a jackass

my eye doc was working on the eye problem but my pcp was

not working on the sarcoidosis .to make a long story short

I loss vision in my right eye and hearing in my left

ear I went into remission so I didn't worry about it until

94' started having grand mal seizures & mental confusion and

I topped it off with Aseptic Meningitis(3-times) that gave me a

dx of neurosarcoidosis.stay on top of this if you don't it

will take over your body.once again welcome if you have

any questons there is always someone here with a answer

Quint