what does Optic neuritis feel like?

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what does Optic neuritis feel like?

Post by Bella98 » Thu Apr 05, 2012 7:56 pm

I have been getting IVIG for presumed "inflammatory polyneuropathy/atypical cidp".. I have had double vision - mild in left eye for a while (since this whole mess first attacked my body) - it occurred suddenly, i went and saw an opthamologist (suburban one) he said things looked fine- it was just stress.. ha... i wish! :)

Anyhow, fast forward to a few weeks ago, my double vision has gotten worse, now in the right eye as well- and I have right eye pain when I move it.. Kind of like when you have the flu but a little worse. The eye/sclera is a little more red than normal I think..

So, I went and saw a neuro opthamologist for the first time yesterday. He said my left eye (the first one effected months ago) looks like it has lost some nerve fibers- showed past optic neuritis .. My right eye (now symptomatic/painful one) looked normal on his exam.. so then he did a test similar to VEPs (had those in the hospital months back - at the time they had to re -run the left side, but ended up stamping a normal on it).. i had the electrodes on my face/forehead and then some underneath my lower eyelid (anyone know what that test is called?) apparently it is similar to VEP's and shows brain/eye "connection".. my right eye was "inconsistent".. So then he decided to repeat my MRI- including orbital studies this time (i have had 2 MRI's in the last year- first one no lesions, 2nd one- one lesion in brain, and possible one in c spine).

So, I was curious if this sounds like an acute ON going on my right eye? this soreness upon movement? also when I look at colors and look away, its like the colors lag or blur for a second... and at times when I look away from colors they change- example- the red looks mometarily blue/greenish? I did pass all of those color tests at the dr yesterday..I am now on IVIG and plaquenil, but if this is by chance MS the treatment is a bit different, so I just want to be on the right tx.

Thanks for any advice!!

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Re: what does Optic neuritis feel like?

Post by jackD » Thu Apr 05, 2012 8:34 pm

My ON pain felt like someone stabbed me in the eye with an ice pick. It would occur in two quick stabs about 3 seconds apart.

I had a dull pain that was very sensetive to touch when I washed my face.

I also lost almost all color vision in my right eye and lost about 20% of my field of vision. A large blind spot in upper right area of my vision.

This made driving a car very tricky. I could not see the traffic lights on poles on the right side when I got close to them.


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Re: what does Optic neuritis feel like?

Post by mrbarlow » Thu Apr 05, 2012 8:50 pm

Varies from person to person. In my experience I had subclinical symptoms in my left eye for a couple of years including dry eye and fatigue. The acute attack occured in November 2010 and included;

A dull headache down my left side of my head and face.
increasingly blurred vision in my left eye and after about 5 days vision gone in lower 70% of field of vision
colour wash out - red
Some pain behind eye

Acute attack resolved quickly with IV steroids

Since then about 95% return of function. Left eye isnt quite as good as right. On going issue with dry eye and sinus trouble on that side.

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Re: what does Optic neuritis feel like?

Post by NHE » Fri Apr 06, 2012 2:36 am

What did ON feel like? Kind of a dull ache or pressure. More significant were the visual effects. It was like walking around with one lens of my glasses permanently fogged over. After IV solumedrol cleared up the fog, I noticed a slight loss of color intensity in the affected eye. In addition, heat, e.g., a hot shower or being out too long on a hot day, would cause my eye to temporarily fog over again. The heat sensitivity took about 6 months to completely go away.


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Re: what does Optic neuritis feel like?

Post by Luongo » Fri Apr 06, 2012 9:11 am

My (presumed) ON doesn't 'feel' like anything, just makes my vision snowy.

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Re: what does Optic neuritis feel like?

Post by CVfactor » Fri Apr 06, 2012 10:01 am

My optic neurits feels like a sharp pain behind my left eye. It is always behind my left eye. This is called unilateral optic neuritis and I think it is characteristic of MS. Bilateral optic neuritis (both eyes) is less prevelant in MS.

But I noticed you said you have lesions on your spine also. There is a disease that effects the spine and optic nerve which is called Neuromyelitis-Optica or NMO (or Devics disease). There has been an antigen identified with this disease, and there is a blood test you can have done to look for this antigen which is called NMO IgG. You might want to ask your doctor about this test.

Best of luck to you.

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