Re: Re: 2nd Opinions and Eye Pain

[Guest guest]

you know, until i did alot of research on my own,i thought i was nuts. but dr. foster from the website i sent you, he believes that any inflammation in the eye, like uveitis, should be treated until you have NO symptoms. Obviously, if you have ocular pain,that should be treated. I also had the injections of steroids around me eye, and they did help.But, if yours arent helping, please take it further. Uveitis, according to dr. foster, is the third leading cause of blindness. Nothing to be taken lightly.

about the stabbing pains, yeah, i get them too. sometimes, they take my breath away. Bonnie B

2nd Opinions and Eye Pain

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

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> 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.

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> 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.

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

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

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

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> Rach

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[Guest guest]

Rach,

I used to be certified as an ophthalmic assistant. I was the office manager for 3 docs and their staff.

Uveitis is serious business. The uveal tract is the spider-web like structure that controls the iris and pupil when it dialates to light. It works as the pressure control center for intra-ocular pressure. That means that when it's inflammed, you stand a huge chance of an acute glaucoma attack.

So many people confuse a glaucoma attack as a "nasty" headache, or they think they have the flu-- as they get that light sensitivity, headache behind and around the eye, nausea, vomiting, and the sensation of being "off-balance." All things we relate to the flu.

Very rarely did we see a patient with a "red" eye (that would be conjunctival inflammation- the conjunctiva being the "white" of the eye, and it actually goes all the way under the eyelid to the eyelashes. If they had a "red" eye, it is because of an simple infection or severe dry eyes and allergies. Also, when people use the "get the red out" eye drops--- they often get a rebound effect of a "red" eye.

I'm not impressed with what you MD has told you-- I don't think he's understands the full effect that sarcoidosis can do with our eyes.

I have had such severe iritis and uveitis that I had to wear dark glasses over my dark glasses. My pupil is adhered to my iris in several places, so when I get any sign of inflammation I am put on Pred Forte drops immediately, along with a drop to keep the pupil dilated wide open, so that it doesn't develop more adhesions.

When a patient would call with "light sensitivity" and headache and nausea, and we knew they had a history of glaucoma or glaucoma suspect-- we were instructed to get them in on an Emergency basis. They got in that day! Even without that info-- it was a same day appt-- if the pressure goes up to much in your eyes, and damages the retina and macula of your eye, you can easily be left with just central vision in that eye-- if you don't completely lose vision of the that eye.

Glaucoma leaves you with feeling like you're looking down the inside of a drinking straw. You lose peripheral vision-- so seeing that car coming out of a parking place, seeing the kids playing on a sidewalk-- unless it's dead ahead of you-- you won't see it.

Personally, I'd be looking for a good Ophthalmologist--M.D-- that specializes in glaucoma -- even tho you have NS. Your Neuro-Ophthalmologist is missing the boat on this one.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Fri, December 4, 2009 5:54:38 PMSubject: Re: 2nd Opinions and Eye Pain

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]

To: Neurosarcoidosis Sent: Sun, December 6, 2009 9:05:59 PMSubject: Re: 2nd Opinions and Eye Pain

Thanks Tracie, I'm going to jump up and down with them a bit more.> >> > > > 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]

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

To: Neurosarcoidosis Sent: Wed, December 9, 2009 7:15:05 PMSubject: 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> > >> >>