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Hi guys,

Something's just dawned on me... I was diagnosed with Optic Neuritis in March and had a fairly speedy MRI which showed three spots with a conclusion that because of their relative positions, there was a possibility of demylinating inflamation (inflammation). However not Dxd at the time as only one clinical occurance...

However none of those spots was on the optic nerve ( though that's what ON is - demylination of the optic nerve. What I'd like your views on is this - was the MRI done too soon after the ON to show this idea of an enhancing active lesion? If I had another one done say in 6 months would that one have "grown" big enough to show up. I've heard/read that the optic nerve is a difficult place for MRI's to pick up ( esp if done quickly after ON.)

Grateful for your views - excellent forum!
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I had the first MRI of the brain 5 months after the onset of what my neuro thinks may have been Retoubular neuritis. I had sudden onset of vision dysfunction that was my first sign of the attack. The optic nerves on fundiscopic exam, done by the opthalmologist and the neuro-opthalmologist looked normal and basically my whole vision exam was normal except for a few things.

I had/ have a visual field defect, an inferior( bottom) harmonious( same in both eyes) quadrantopsia( 1/4 of the field of vision) field defect( blind spot). Which means that out of the four quadrants that make up my field of vision, I am blind in one of the four quadrants.

Also the eye exam showed dry eye, Meibomian Gland Dysfunction( these glands help create the tear film), and blepharitis( inflamation (inflammation) of the eye lids). I also had a possitive VEP that showed slowing in one eye.

The neuro's and the eye doctors say that my vision dysfunction are caused by the 10 white matter lesions that are primarily over the visual pathways in the brain. When you have Retoubular Neuritis it cannot be seen on fundiscopic exam as it is too far back toward the brain to be seen in this way.

Now, wheather these lesions that are mainly over the visual pathways in my brain, are evidence of Retoubular neuritis or if it can even be seen on the MRI that far back is something that I have wondered about myself. My neuro's never said that it was identified on MRI, but they are asumming that it is there based on the possitive VEP and me having every single symptom of ON at onset!

The only scan I had at the onset was a CT scan that was negative. It didn't even show the multiple white matter lesions that the MRI picked up five months later.Hope this helps to answer some of your questions. If you need to ask anything else don't hesitate to ask!

Take Care
That's a good question - I've had some symptoms of ON, including the color change problem, but I have no lesions on my optic nerve.
Hi! I just was diagnosed with optic neuritis a week and a half ago-ish. And had the MRI done on Friday and today the Eye Dr. said "it looks fine" from his viewpoint... so perhaps doing it too soon could be a problem.
Let us know if you find out anything...
Are you saying that your MRI was clear? Did your fundiscopic exam show anything on the optic nerves? What I was saying before was sometimes you can have ON farther back behind the eyes, and toward the brain, And this is called Retoubular Neuritis. It doesn't usually show up with the opthalmologist exam as it is too far back on the optic nerve to show up on the fundiscopic exam.  My MRI  showed multiple lesions over the visual pathways but it did not show the optic nerve damage, but that doesn't mean that I didn't have Retoubular neuritis , it only means that it could not be seen on the MRI. This is what my neuro-opthalmologist told me.

Now, if you showed damage on the optic nerve head through the fundiscopic exam that your opthalmologist done, then you have the evidence that you do have ON. It may or may not show up on the MRI. I am not sure how long it takes for the lesions to appear in the white matter, because my first MRI was not done until 5 months after the onset of visual dysfunction. But I can tell you that my optic nerves appeared normal through fundiscopic exam from the start and still look normal now two years later.

apparentely the optic nerve goes from the eye all the way back to the brain and you may have inflamation (inflammation) anywhere along the optic nerve. When the inflamation (inflammation) is on the portion of the optic nerve that can be seen by the opthalmologist then it is called ON. But when it is behind the eye toward the brain it is called Retoubular Neuritis. This is just another form of ON.

Did your opthalmologist give you any steriods or any kind of treatment to take down the inflamation (inflammation)? If you do get treatment it usually takes about 6 months for it to clear up. I didn't get any treatment so I am not sure how long it is going to take , but April of this year marked the two year mark since the onset. It is still improving, but it has been painfully slow! But the eye doctors and neuro says as long as it is still improving then I may recover more of my vision loss back.But no guarantees on if it will be complete!

Hi Santana,

The information you've provided is excellent. Mine was diagnosed as retrobulbar neuritis and I see what you mean - it can be far back in the brain rather than just on the optic nerves. Very helpful.

My MRI said I had a "developmental venous anomoly" ( DVA) around the temporal occipital area ( although I think these are common enough.) This area is in an around the optical area too.

Good post!
Hi there!!

Just wanted to say hello, and thank you for joining us.  

We really have some pro's here, and hope we can be of some help.  Please, feel free to share your story if you like.

Are they saying CIS for you?  Just one occurance you mention.  Have they offered to DMD's?  What's going on otherwise?  I'm not nosey, promise, and you don't have to engage if you wish not too - We'll take you either way!!!!

Here is my 2 cents...

I have had ON since late January, and an earlier episode in other eye about 17 years ago.

Since the latest ON and subsequent dx of MS in March, here is what I have found out about ON/MS...

The best way to determine inflamation (inflammation) (the result of acute ON) and atrophy of the optic nerve (the later by-product of "resolved" ON), is through a test called an OCT (optic coherance tomography - i think that is the correct spelling - google OCT and you should find it).  This is a quick, non-invasive, painless test that "maps" the full length of your optic nerve.  It shows areas of inflamation (inflammation) (swelling) and areas where the nerve has "shrunk" - atrophy.  

It is thought that atrophy of the optic nerve is also a precurser to atrophy of the brain, and that routine OCT testing (annually) will give a good picture of not only atrophy in the octic nerves themselves but a better indication of brain atrophy than an MRI - as brain atrophy has to be pretty signigicant to show up on an MRI and the OCT of the Optic nerve is much more sensitive and shows very small changes, and since optic nerve tissue is the same as brain tissue it is the general medical consensus that this is a reflection of future brain atrophy by the disease.  

The OCT I had done in April showed my left eye (ON 17 years ago) had some significant atrophy  - although my vision in that eye is still 20/20.  My right eye showed some inflamation (inflammation) in the back part of the nerve - that is the eye I have been having trouble with since January.  No lesions on my optic nerve showed up on the MRI conducted in Feb and no noticable inflamation (inflammation) could be seen by my general opthamologist in January or Feb, nor could it be "seen" by the neuro-opthamologist I saw in April who ordered the OCT.  

I hope this makes sense.  

"Seeing" the atrophy that has already occured to my one optic nerve, convinced me to start on Copaxone therapy - I had been really on the fence about imeds since my only real "problems" had been the 2 episodes of ON, 17 years apart.  I thought that I had had complete recovery from the original incident since my vision came back 99%, but seeing how much damage it actually did to my nerve, I decided to do whatever I could to prevent future attacks.  
Hi Sllowe and Jewski! And everyone.

Again - great insights and posts.

Well I'm new here but learning from you all....I'm a 43 year old bloke ( In the US that's "guy":-) )my story of association with  the whole area of MS came from nowhere in february with retrobulbar ON diagnosed when I had the pain in eye movement followed by the gray mist in my vision ( including peripheral.) I saw an opthamologist who dxed Retrobulbar ON and said to come back in 6 weeks ( no steroids or any treatment.) I booked in with a MS neuro who ordered MRI.  

When I went for result the neuro didn't have it and rang the MRI people and then gave me a very fast overview without looking at it - which was basically - its not clear but not much we can do. Just wait and see etc etc . So with one clinical occurenceI have no Dx for MS as yet. I'm also getting flashing Phosphenes when I put out the light at night.

Neuro is great guy but I think his strategy is not to meet trouble half way. I think he knows very well I'll be back to see him but its the darned waiting for something to happen! Maybe he thinks he's giving me a chance to sort out extra health insurance or something if he leaves well enough alone for now :-)   ! I'm feeling OK at present. ON largely gone except for phosphenes when I'm going to bed. The other night I had tired eyes and thought I was getting pain in the other eye - but OK now.

Here's my MRI result.  

Three small areas of T2 hyperintensity are noted on the brain study. The two supratentorial foci in isolation would be considered a non-specific finding. However, the presence of an area of abnormality in the deep right cerebellar hemisphere would indicate that inflammatory demyelination is a more likely possibility. This alone however would not be a considered diagnostic of this.


There are two tiny areas of T2 hyperintensity involving a subcortical white matter of the posterior right frontal lobe and the periventricular deep white matter adjacent to the posterior aspect of the left lateral ventricle respectively. The remainder of the cerebral hemisphere white matter appears normal. The corpus callosum is normal.

Coincidental note is made of a developmental venous anomaly ( DVA) in the left temporo-occipital region. This is a coincidental finding.

There is a tiny nodular area of T2 hyperintensity in the deep right cerebellar white matter. The remainder of the cerebellum is normal. The brain stem structures appear normal.

Intracranial vascular flow voids, both arterial and venous are normal. Cerebrospinal fluid spaces are normal. Patchy mucosal thickening is seen in the paranasal sinuses consistent with inflammatory change.

Can you help me to understand what might happen in the future? I'm pretty pragmatic.

Many thanks

>  Can you help me to understand what might happen in the future?

That's the first thing I wanted to know after I was diagnosed, and it's the one thing that nobody can answer for you.  Everybody's disease course is different - as individual as we are.  As you go through relapses and remissions, you'll begin to anticipate how you'll feel, and how much you can do.  

For example, typically I feel the worst in the morning - from 10:30 to 4:00, I'm woozy and trembly.  After 4:00, things start settling down and I'm able to get through the rest of my day.  (I work from noon to 8:00.)  If I called in sick every time I felt that way in the morning, I'd never get to work!  If I can hang out and make it through my woozy time, I'll be fine - as long as I'm not actually in remission.

I also find that overdoing it takes more than a day to recover from. Sometimes it takes three or four days to recover from being out in the sun and drinking beer, for instance.  Or if I do too much in the garden, it'll take a day and a half to recover from that.  Mowing the yard, if it's hot, takes a day to get over, sometimes a day and a half.  

See what I mean?  It's all a matter of trying it first.  Just remember that the symptoms you're experiencing won't kill you, they'll just make your life uncomfortable and inconvenient.
You mentioned that you did not have steriods offered at the time of diagnosis.  

Have you had them subsequently?  

Is your vision still effected?  

In so, I would suggest that even though it may be late in the game, that you request a course of high dose (1000mg/day) IV methylpredisolone (MP) for 3-5 days (some drs do 3 and some do 5).

My ON was dx in January, and was not offered steriods until late March.  When I tried them at that time I had a terrible allergic reaction - you can see my earlier post about it to get all the details if you are interested.  But long story short... I tried them again a couple weeks ago - predosed and used benedryl for a week to prevent reaction, and was able to complete the whole 5 day course of IV MP.  

Even though the ON started in January, and I didn't get the MP until May,, I still noticed an improvement in my vision.  It is still not 100%, but I saw a more marked improvement after those 5 days than I did in 3 months.

Dr. may tell you it is too late or that not needed, but I would definately recommend that you push for it.

In addition, if this is your first incidence, then you really should be offered it becasue there is evidence that if you have the IV MP, then the chances of you developing full blown MS within the next 2 years is dramatically reduced.  Look up the Optic Neuritis Treatment Trial (sometimes refered toas the ONTT) for more information.

As far as what to expect in the future...

I too wish I knew.  I have been lucky enough to have a fairly benign course of the disease.  Mine actually started over 20 years ago, and the only real relaspes I can attribute to the MS are

numbness and weakness on the right side of my body from neck down (20 years ago - Inital Clinicaly isolated syndrome) that resolved itself after about 3 weeks.

ON in left eye 17 years ago - at that time it was not thought to have anthing to do with MS, but due to another eye disease I have - now I believe that it was in fact my second episode of MS

ON in right eye in January of this year.

And in hindsight I am also tired alot and don't sleep well - but I always lumped the tired alot with the not sleeping well and never thought the fatigue could be an issue on its own.

I'm sure there probably were other incidents, but minor ones that I just at the time attributed to other things... getting older, having kids later in life putting extra strain on body, muscle pulls, working too hard, etc...

FYI, the neuro-opthamologist  I recently saw mentioned that those patients that present mainily with sensory ms symptoms - eyes, hearing, tingling, etc, TEND to have a milder course of the disease in the long run, so who knows, maybe your course will be similar to mine.  The future is still uncertain, but it is anyway.  Keep a positive attitude and be your own best medical advocate.  Don't give in if you feel strongly about something with your care - the Dr doesn't always know best.  You know your body better than anyone else and when something is or isn't right.  

Best of luck.  Feel free to contact me if you have any questions.
I didn't receive steriods or any treatment for the Retoubular neuritis two years ago, but I did ask ( almost begged for it ) , but my neuro said no. He said that the steriods were only effective in the acute stage and to take them 5 months later would not do anything, and would only put me at risk for the side effects they cause.

I have wondered, if I had recieved them if it would have made a difference. From what I read about this, the steriods don't affect the out come of vision, but they can speed the recovery time. Still 6 months compared to two years is a major difference to me.

I had a friend who was put on the paroxetine, same as I was , and she suffered the same vision symptoms that I did. I was switched to paroxetine 6 weeks prior to the onset of vision dysturbance. Anyway, my friend did get steriods, and her vision recovered in about 6 months. But now some three years later she still has to go get steriod shots to prevent the vision disfunction from coming back. She is dependent on the steriods now.

She hasn't been checked for MS or ADEM which is what my dx is for now. This kind of makes me glad that my neuro didn't listen to me and give me the steriods, because eventhough this has been healing for two  years, it is still improving and I have not had any relapes of the symptoms.

But still, I remain confused about this topic. I still wonder if the steriod treatment might have been what I should have gotten.

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