Re: 2nd Opinions and Eye Pain

[Guest guest]

Eye pressure was 19. I am seeing an opthalmologist - specialist in inflammatory

diseases and uveitis, (I saw a different opthal at last appoint b/c mine was

away).

I am VERY light sensitive, live in sunnies.

The pain peaked about 2 weeks ago with nausea and I vomited, since then I have

been taking pain killers around the clock, but I can still feel it there.

Seeing my neuro on the 17th Dec.

I will check the archives.

>

> What is your intraocular eye pressure?  Do you have glaucoma?   Are you

seeing an Ophthalmologist (M.D.) or an Optometrist (O.D.)? 

> I suspect that you are VERY light sensitive? 

> Granulomas can form very quickly-- and are generally microscopic in size.  As

sarcoidosis advances, they can get larger. 

> When the pain hits in that eye, does it make you nauseated?  With the

headache from hell?  Do you feel like you've got the worse case of the flu when

this pain hits, but don't have any fever? 

> I ask this because these are signs of an acute glaucoma attack, which is very

much a threat to your vision.  Are you able to get into the MD when this pain

is at it's worse, or do they have you come in the next day? 

> If you use our MESSAGE ARCHIVES and search by IRITIS, UVEITIS, GLAUCOMA you'll

get a large number of posts on Ocular Sarcoidosis.  Please read them!  They

really explain what is happening to you when you have sarcoidosis in your eyes.

> The shooting pain may be a pinched nerve in your neck or back.  Mitch may be

able to help answer this part of your post.

> Many of our members have had the diagnosis of MS only to find out later that

it was sarcoidosis all along.  What a frustration..

>

> Take care and ask questions, we'll help where we can.

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ________________________________

>

> To: Neurosarcoidosis

> Sent: Wed, December 2, 2009 1:56:49 AM

> Subject: 2nd Opinions and Eye Pain

>

>  

> I have sarc lymh nodes chest, cns and uveitis.

>

> I have been battling really bad eye pain in my right eye. My regular opthal

has been giving me a steroid inject under it every 6 weeks and giving me pain

killers.

>

> On friday I had to see a different opthal at my clinic as mine was on

holidays. He said people with uveitis don't usually get pain without red eye.

And its more likely to be a granuloma pushing on a nerve behind it.

>

> My last scan in June was clear. Does anyone get pain without red eye and how

quickly does a granuloma form??

>

> And does anyone get random stabbing pain. Lately I have it in my back (upper)

upper arm and through my hand.

>

> I'm still learning about sarc (I was diagnosed with MS for 5 years).

>

> Rach

>

[Guest guest]

Rach,

The information the doctor gave you is incorrect about the eye. My eye with uveitis never gets red but I have had inflammation for over 6 years. I also get orbit pain, sometimes dull like a headache around my eye, which my doctor says is like arthritis around the eye. But, sometimes, it's very painful and I've had to cover my eye.

2nd Opinions and Eye Pain

I have sarc lymh nodes chest, cns and uveitis.

I have been battling really bad eye pain in my right eye. My regular opthal has been giving me a steroid inject under it every 6 weeks and giving me pain killers.

On friday I had to see a different opthal at my clinic as mine was on holidays. He said people with uveitis don't usually get pain without red eye. And its more likely to be a granuloma pushing on a nerve behind it.

My last scan in June was clear. Does anyone get pain without red eye and how quickly does a granuloma form??

And does anyone get random stabbing pain. Lately I have it in my back (upper) upper arm and through my hand.

I'm still learning about sarc (I was diagnosed with MS for 5 years).

Rach

[Guest guest]

Rach,

Also, you may want to see an ocular immunlologist. They specialize in eye problems for people with problems like ours. Dr. has a very good link on the web. He's at Massachusetts General hosp. There's a lot of information about uveitis, since he is a specialist in this field. Good luck. Bonnie B

2nd Opinions and Eye Pain

I have sarc lymh nodes chest, cns and uveitis.

I have been battling really bad eye pain in my right eye. My regular opthal has been giving me a steroid inject under it every 6 weeks and giving me pain killers.

On friday I had to see a different opthal at my clinic as mine was on holidays. He said people with uveitis don't usually get pain without red eye. And its more likely to be a granuloma pushing on a nerve behind it.

My last scan in June was clear. Does anyone get pain without red eye and how quickly does a granuloma form??

And does anyone get random stabbing pain. Lately I have it in my back (upper) upper arm and through my hand.

I'm still learning about sarc (I was diagnosed with MS for 5 years).

Rach

[Guest guest]

Rach, Here's his website. Bonnie B

http://askcsf.yuku.com/topic/1699/master/1/

2nd Opinions and Eye Pain

I have sarc lymh nodes chest, cns and uveitis.

I have been battling really bad eye pain in my right eye. My regular opthal has been giving me a steroid inject under it every 6 weeks and giving me pain killers.

On friday I had to see a different opthal at my clinic as mine was on holidays. He said people with uveitis don't usually get pain without red eye. And its more likely to be a granuloma pushing on a nerve behind it.

My last scan in June was clear. Does anyone get pain without red eye and how quickly does a granuloma form??

And does anyone get random stabbing pain. Lately I have it in my back (upper) upper arm and through my hand.

I'm still learning about sarc (I was diagnosed with MS for 5 years).

Rach

[Guest guest]

Rach,

Sorry, I was at work when I sent the other link. This one is for the homepage. Bonnie

http://www.uveitis.org/patient/support/default.html

2nd Opinions and Eye Pain

I have sarc lymh nodes chest, cns and uveitis.

I have been battling really bad eye pain in my right eye. My regular opthal has been giving me a steroid inject under it every 6 weeks and giving me pain killers.

On friday I had to see a different opthal at my clinic as mine was on holidays. He said people with uveitis don't usually get pain without red eye. And its more likely to be a granuloma pushing on a nerve behind it.

My last scan in June was clear. Does anyone get pain without red eye and how quickly does a granuloma form??

And does anyone get random stabbing pain. Lately I have it in my back (upper) upper arm and through my hand.

I'm still learning about sarc (I was diagnosed with MS for 5 years).

Rach

[Guest guest]

Hi Rach, I do get random stabbing pain all the time, here and there.  I have granuloma's CNS too, they don't have to be very big it be bothersome, and as they get irritated they swell causing even more problems.

I am just 2nd day out from Remicade, so not around too much lately.  Are you on any other meds? Marla

 

I have sarc lymh nodes chest, cns and uveitis.

I have been battling really bad eye pain in my right eye. My regular opthal has been giving me a steroid inject under it every 6 weeks and giving me pain killers.

On friday I had to see a different opthal at my clinic as mine was on holidays. He said people with uveitis don't usually get pain without red eye. And its more likely to be a granuloma pushing on a nerve behind it.

My last scan in June was clear. Does anyone get pain without red eye and how quickly does a granuloma form??

And does anyone get random stabbing pain. Lately I have it in my back (upper) upper arm and through my hand.

I'm still learning about sarc (I was diagnosed with MS for 5 years).

Rach

[Guest guest]

Now I'm really confused.

>

>

> Rach,

> The information the doctor gave you is incorrect about the eye. My eye with

uveitis never gets red but I have had inflammation for over 6 years. I also get

orbit pain, sometimes dull like a headache around my eye, which my doctor says

is like arthritis around the eye. But, sometimes, it's very painful and I've had

to cover my eye.

>

>

>

> 2nd Opinions and Eye Pain

>

>

>

>

> I have sarc lymh nodes chest, cns and uveitis.

>

> I have been battling really bad eye pain in my right eye. My regular opthal

has been giving me a steroid inject under it every 6 weeks and giving me pain

killers.

>

> On friday I had to see a different opthal at my clinic as mine was on

holidays. He said people with uveitis don't usually get pain without red eye.

And its more likely to be a granuloma pushing on a nerve behind it.

>

> My last scan in June was clear. Does anyone get pain without red eye and how

quickly does a granuloma form??

>

> And does anyone get random stabbing pain. Lately I have it in my back (upper)

upper arm and through my hand.

>

> I'm still learning about sarc (I was diagnosed with MS for 5 years).

>

> Rach

>

[Guest guest]

I'm not on any medication at the moment (other than pred forte eye drops). The

last infusion of methylpred I had was in September. My neuro and opthal can't

decide on what to give me.

>

> >

> >

> > I have sarc lymh nodes chest, cns and uveitis.

> >

> > I have been battling really bad eye pain in my right eye. My regular opthal

> > has been giving me a steroid inject under it every 6 weeks and giving me

> > pain killers.

> >

> > On friday I had to see a different opthal at my clinic as mine was on

> > holidays. He said people with uveitis don't usually get pain without red

> > eye. And its more likely to be a granuloma pushing on a nerve behind it.

> >

> > My last scan in June was clear. Does anyone get pain without red eye and

> > how quickly does a granuloma form??

> >

> > And does anyone get random stabbing pain. Lately I have it in my back

> > (upper) upper arm and through my hand.

> >

> > I'm still learning about sarc (I was diagnosed with MS for 5 years).

> >

> > Rach

> >

> >

> >

>

[Guest guest]

Thanks, I have contacted him before via his discussion board (because I'm in

Australia) but you have reminded me to check in again, since the diagnosis has

changed.

>

>

> Rach,

> Sorry, I was at work when I sent the other link. This one is for the

homepage. Bonnie

>

>

>

> http://www.uveitis.org/patient/support/default.html

> 2nd Opinions and Eye Pain

>

>

>

>

> I have sarc lymh nodes chest, cns and uveitis.

>

> I have been battling really bad eye pain in my right eye. My regular opthal

has been giving me a steroid inject under it every 6 weeks and giving me pain

killers.

>

> On friday I had to see a different opthal at my clinic as mine was on

holidays. He said people with uveitis don't usually get pain without red eye.

And its more likely to be a granuloma pushing on a nerve behind it.

>

> My last scan in June was clear. Does anyone get pain without red eye and how

quickly does a granuloma form??

>

> And does anyone get random stabbing pain. Lately I have it in my back (upper)

upper arm and through my hand.

>

> I'm still learning about sarc (I was diagnosed with MS for 5 years).

>

> Rach

>

[Guest guest]

Hi ,

 I have been  taking Cellcept for a couple of years. It works fairly well

better than the Imuran for me. My only real complaint is the nausea but the

doctor said I could have a pill for that if I wanted but the thought of one more

med was unberable. The nausea does not last very long. I wish you well. I'll

say a prayer for you.

Subject: Re: Re: 2nd Opinions and Eye Pain

To: Neurosarcoidosis

Date: Thursday, December 10, 2009, 12:44 AM

 

mycophenolate  = Cellcept.

This is one of the BRM's-- Biological Response Modifiers that help control the

amount of TNF-a TNF-b cells that our body has too many of.  I know several

members are on it-- and I'm sure they'll answer and give you more feedback as to

their experiences. 

These drugs are showing promise-- and we still have a long LONG way to go.

I'm glad you'll have a chance to get some relief. 

Take care,

Tracie

NS Co-owner/moderator

From: rachyanne <stiks11 (AT) hotmail (DOT) com>

To: Neurosarcoidosis@ yahoogroups. com

Sent: Wed, December 9, 2009 7:15:05 PM

Subject: Re: 2nd Opinions and Eye Pain

 

My neurologist rang me today to tell me I have been approved by my hospital

pharmacy to try mycophenolate for 3 months.

> > >

> > >

> > > Rach,

> > > The information the doctor gave you is incorrect about the eye. My eye

with uveitis never gets red but I have had inflammation for over 6 years. I also

get orbit pain, sometimes dull like a headache around my eye, which my doctor

says is like arthritis around the eye. But, sometimes, it's very painful and

I've had to cover my eye.

> > >

> > >

> > >

> > > 2nd Opinions and Eye Pain

> > >

> > >

> > >

> > >

> > > I have sarc lymh nodes chest, cns and uveitis.

> > >

> > > I have been battling really bad eye pain in my right eye. My regular

opthal has been giving me a steroid inject under it every 6 weeks and giving me

pain killers.

> > >

> > > On friday I had to see a different opthal at my clinic as mine was on

holidays. He said people with uveitis don't usually get pain without red eye.

And its more likely to be a granuloma pushing on a nerve behind it.

> > >

> > > My last scan in June was clear. Does anyone get pain without red eye and

how quickly does a granuloma form??

> > >

> > > And

does anyone get random stabbing pain. Lately I have it in my back (upper) upper

arm and through my hand.

> > >

> > > I'm still learning about sarc (I was diagnosed with MS for 5 years).

> > >

> > > Rach

> > >

> >

>

[Guest guest]

Hi Rach, I do have eye pain without redness. I have been told I have Sjogren's Syndrome. "This particular autoimmune illness causes inflammation in certain glands of the body. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and eye dryness. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth and dry lips." I also have a chronic sinus infection which also contributes to the pain. I use eye gel, which cools and reduces the swelling of the cornea. Mine seems to get worse in the winter months (I live in Canada) so unfortunately, it is back for this winter already. If it gets worse, I will be in contact with my

doctor to have the tear duct plugs put in. I am sure your doctor knows all about this however, maybe mention it and see what he says.

I also have the shooting pains in my arms...I had nerve conduction studies done and I have carpal tunnel. Never a dull moment eh?

I hope everything works out for you. take care,

from the centre of Canada

Subject: 2nd Opinions and Eye PainTo: Neurosarcoidosis Received: Wednesday, December 2, 2009, 9:56 AM

I have sarc lymh nodes chest, cns and uveitis.I have been battling really bad eye pain in my right eye. My regular opthal has been giving me a steroid inject under it every 6 weeks and giving me pain killers.On friday I had to see a different opthal at my clinic as mine was on holidays. He said people with uveitis don't usually get pain without red eye. And its more likely to be a granuloma pushing on a nerve behind it.My last scan in June was clear. Does anyone get pain without red eye and how quickly does a granuloma form??And does anyone get random stabbing pain. Lately I have it in my back (upper) upper arm and through my hand.I'm still learning about sarc (I was diagnosed with MS for 5 years).Rach

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!

[Guest guest]

Hello Rach

Originally, the docs thought I had Devic's disease because of my eye pain and inflammation. Then after bronchoscopy (flintstones procedure) ta da...neurosarc. My opthamologist periodically measures the inflammation to be proactive vs. reactive. His estimates have been pretty good. I wish you peace of mind.

me

From: rachyanne <stiks11 (AT) hotmail (DOT) com>Subject: 2nd Opinions and Eye PainTo: Neurosarcoidosis@ yahoogroups. comReceived: Wednesday, December 2, 2009, 9:56 AM

I have sarc lymh nodes chest, cns and uveitis.I have been battling really bad eye pain in my right eye. My regular opthal has been giving me a steroid inject under it every 6 weeks and giving me pain killers.On friday I had to see a different opthal at my clinic as mine was on holidays. He said people with uveitis don't usually get pain without red eye.. And its more likely to be a granuloma pushing on a nerve behind it.My last scan in June was clear. Does anyone get pain without red eye and how quickly does a granuloma form??And does anyone get random stabbing pain. Lately I have it in my back (upper) upper arm and through my hand..I'm still learning about sarc (I was diagnosed with MS for 5 years).Rach

Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now!