MULTIPLE SCLEROSIS RISK AFTER OPTIC NEURITIS

[sllowe]

     Check this out - results from follow up study/trial:
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Multiple sclerosis risk after optic neuritis: final optic neuritis treatment trial follow-up

Optic Neuritis Study Group.
Collaborators (28)

Brodsky M, Nazarian S, Orengo-Nania S, Hutton GJ, Buckley EG, Massey EW, Bhatti MT, Greer M, Goodwin J, Wall M, Savino PJ, Leist T, Miller NR, Irani D, Trobe JD, Cornblath W, Kaufman DI, Eggenberger E, Kupersmith MJ, Shults WT, McAllister L, Hamilton S, Beck RW, Dontchev M, Gal RL, Kollman C, Keltner JL, Smith CH.

OBJECTIVE: To assess the risk of developing multiple sclerosis (MS) after optic neuritis and the factors predictive of high and low risk. DESIGN: Subjects in the Optic Neuritis Treatment Trial, who were enrolled between July 1, 1988, and June 30, 1991, were followed up prospectively for 15 years, with the final examination in 2006. SETTING: Neurologic and ophthalmologic examinations at 13 clinical sites. PARTICIPANTS: Three hundred eighty-nine subjects with acute optic neuritis. MAIN OUTCOME MEASURES: Development of MS and neurologic disability assessment. RESULTS: The cumulative probability of developing MS by 15 years after onset of optic neuritis was 50% (95% confidence interval, 44%-56%) and strongly related to presence of lesions on a baseline non-contrast-enhanced magnetic resonance imaging (MRI) of the brain. Twenty-five percent of patients with no lesions on baseline brain MRI developed MS during follow-up compared with 72% of patients with 1 or more lesions. After 10 years, the risk of developing MS was very low for patients without baseline lesions but remained substantial for those with lesions. Among patients without lesions on MRI, baseline factors associated with a substantially lower risk for MS included male sex, optic disc swelling, and certain atypical features of optic neuritis. CONCLUSIONS: The presence of brain MRI abnormalities at the time of an optic neuritis attack is a strong predictor of the 15-year risk of MS. In the absence of MRI-detected lesions, male sex, optic disc swelling, and atypical clinical features of optic neuritis are associated with a low likelihood of developing MS. This natural history information is important when considering prophylactic treatment for MS at the time of a first acute onset of optic neuritis.

I will post the link to our favorites links HP!

-Shell

[sllowe]

Visit below for full text:

   http://archneur.ama-assn.org/cgi/content/full/65/6/727

Hope this helps,
-Shell

[sllowe]

Bumping for those wanting to know more about MS risk after ON diagnosis.

-Shell

[colleen2b]

I'm wondering if brain lesions are permanet? I had a MRI done a year after my ON, HMO, would it still show?

[LATW]

Thanks!  I had ON and a very small spot that has now been called a 3mm lesion.

I had forgotten about this.  What is wrong with that crazy neuro of mine!

LA

[twopack]

bump for LATW

[Lulu54]

I am still in that 20% or so that has MS but hasn't had ON (at least that any of my doctors know)  - I just was at the opthamologist last week, sure I had something ON related going on with my eye.  After hours of testing it was finally determined I have dry eye.  

It has caused pain in my eye, possible my random headaches, the constant red eye/bloodshot /pinkeye look, and other stuff.  

I wrote about it in my journal at
http://www.medhelp.org/user_journals/show/127600?personal_page_id=5829

Just be sure if you are having eye problems to have the doctor test everything.  

Thanks for the bump Shell, I had missed this one in the past.  The stats are very compelling about ON as a predictor of MS.  

as always,
L

[sllowe]

bump

[sllowe]

bump

[Marmite100]

What a brilliant thread, thank you!

It's puts things into perspective, very much appreciated :-)

I thought I had a contact lens infection when ON first occurred for me and went to minor injures for some antibiotics (although my eye wasn't red).  I would completely agree about the mascara feeling.

Sandie do you have your appointment soon?

[sllowe]

Hi Sandie,

Welcome to the forum.  Though you found us throught this ON discussion, I'm going to ask you to copy and paste your post here to a new one all on it's own.  One you copy it, just click on "post a question" and paste it there.

That way we can welcome you properly and respond to your concerns.  

So glad you are going to a the neuro.

Thanks for joining us!

[sandie490]

Hey sllowe, and everyone else!

I have been experiencing, twitching, weakness, a little burning, and pain in the eyball when moved certain ways.  Once in a while it feels like I have the masqara, or sand also.  
In the morning, alot of times, it actually feels like the lid is drooping a little, and stays that way most of the morning.  Then, throughout the day, my eye will twitch, and when I close my eye and try to open it,the lid gets tremors, and little shakes and it is difficult to open.
I have had that symptom for a couple of months, the eye pain started this week, but it doesn't appear to be progressing yet.  I have had bad vertigo on and off also. My eyeball feels sore all the time. No vision distortion except, I just bought new glassed 6 months ago, but they don't feel strong enough, having trouble seeing, keep needing to refocus all the time.
Does this sound familiar to anyone?  I am undxed.  My sis was just dx, just from ON, vertigo, one brain lesion,one positive lp band.
I have an app for my neuro I think Aug.  Any thoughts about these eye symptoms?  
Anyway, there you go, Isn't this annoying!   Sandie

[Becky559]

Thank you for all the information, and the stories that it led to. I will know more this Monday. I hope this isnt a long time in diagnosising me,(whether it is or isnt) as I see it has been for so many people on this site. Iam sorry the anyone facing this or dealing with its effects.
Thanks,
Becky

[michelleric]

Thank you for posting this. I have had 2 bouts of ON, vision still recovering in one eye. Just wanted to thank you for this information,
Michelle

[Karen99]

After nearly two years of MS sensory-type symptoms, I developed optic neuritis.  It caused blurry vision in one eye and a good deal of pain upon any eye movement.  I went to several opthamologists and optomotrist who found nothing wrong.  One bright  opthamalogist LISTENED to me despite nearly normal vision tests.  He told me that even though I was seeing well, I knew my vision better than anyone else, thus he believed that there was something amiss.  He suggested I get an MRI.  

I got home and researched the topic and I didn't like the answer and figured, oh well, if I have MS I'll know soon enough.  The thought of having MS scared me so I ignored it until I could ignore it no more when double vision set in along with numbness and profound fatigue.  This was about a year later from the optic neuritis.

It's great when doctors listen to us even when we ignore their suggestions.  His suggestion did prepare me for the diagnosis of MS.  I knew something was wrong in my central nervous system.  I could feel my brain on fire.  (that sensation has stopped.)  H

Has anyone else had the sensation of brain heat when in an exacerbation or relapse?

[Eyesnlegs]

What a great bump

Very informative, can someone please tell the world about ON - when I had it so very badly in 1989 I was not even referred to a neurologist let alone let near to an MRI.

Do I sound bitter - well that's because I am!

Bless all you wonderful folks for the info you give here
Pat
x

[sllowe]

BUMP

[Deb61]

Maybe the MRI I just had a few weeks ago will show if they are old or new lesions on the optic nerve.  I haven't heard about the results yet.  The MRI before last didn't show anything--but that area of brain was not focused on.  

[LATW]

Have you had an MRI? That is what helped get mine dx'd last year.  This second time with ON I had optic palar but still had another  MRI.

LA

[Deb61]

I think I've had ON, too, for a very long time.  Some of things you've described are very familiar.  I get the mascara in the eye feeling all the time (even when I'm not wearing any) and the dull ache has not disappeared, yet.  

There was a time, a few years ago, when I thought my contact lenses hurt my eyes, because I had some intense pain in both of my eyes and couldn't even come out of a dark closet.  I was driven directly to the urgent care, with a towel covering my eyes and I was diagnosed with eye infection and given drops and an ointment.  I couldn't see for the entire summer--I thought that it was the stuff that was prescribed for me for my eyes.  The pain was horrid and it took a few weeks to "heal".  So, I'm wondering if this was actually my first bout with ON.

[LATW]

My first ON started May 2007.  I started out with a lot of pressure and pain in my eye. I thought maybe I had used mascara that had gone bad or something.  I had no idea what was wrong.

I had stabbing knife pain shooting through my eye.  I've had pink eye so I knew that was not it.  Then my eye started to get blurry even with my glasses on.  So I called my eye doctor.

His first dx was a blister on my retina.  He could not see it but didn't feel it was ON because he did not see a swollen optic nerve.  He wanted me to wait a month to see what happened.

I got on line and started looking up eye problems and my symptoms sounded like ON rather than this blister thing.  I called my eye doctor back to let him know I was getting worse.  I had to wear sunglasses in the house, at night!  

I could not tolerate any light.  I could not think, my vision was a mess, I was so weak I couldn't even cut through a pizza.  My right leg was weird. It felt as if it was not connected. It was not numb but not right.

So the eye doctor got me into a eye doctor who is a specialist.  He sent me for an MRI.  MRI confirmed ON, an active lesion, and an old lesion.  But neither were in the "right" MS spot.

I went to a Neurologist who saw the ON and  the lesions but because they were not in the "right" spot she didn't do anything about my ON.  So I decided to go get a second opinion.  Second opinion was no better.  I went back to the eye doctor and he said my vision field test had improved so, ok, fine.  I decided to forget it and go on.

Then January of this year I started the same symptoms in the same eye.  Went back to the specialist and back into the MRI.  I had a second bout of ON.  My vision field test this time was worse than with the first bout of ON.

So I finally got an appointment with the MS clinic and was diagnosed with MS at the first appointment.  I have never had any treatment for ON so far.  

Like way too many here I was patted on the head and sent home or passed off on someone else.  I would have gone to the MS  clinic with my first attack but my insurance didn't cover that clinic. After the first of the year  our insurance changed and I was able to go.  

My PCP felt it was MS from the start and he is the one who wanted me to get to the MS clinic.  

Sorry this is so long but that is my ON story. :)

LA

[Deb61]

I'm thinking back on when I first started having trouble with my vision, which is years ago.  However, MS was the last thing that I thought I had.  I wish I knew about this before.

Thank you,
Deb

[Deb61]

I was diagnosed with optic neuritis in August (but have had visual problems for months), but the color desaturation problem is still there which I only notice in bright light (red cars or less red in my right eye, etc.).  I still have a dull ache in my right eye.  Visual acuity is only bad at night, though.  

I'm not sure what I'm experiencing is permanent or Uthoff's or what.  How long did your attack last?  My neuro mentioned putting me in the hospital if the problem got worse for IV steroids (which it hasn't--remained the same or possibly improved).  Did you have any specific treatment for ON?  If so, did it help you?  Have you noticed any permanent problems with your vision?

Deb

[LATW]

Well, I have read it can present different ways.  Mine was stabbing pain that seemed to run right through the center of my eye to the back. My eye was sore but not red.

I thought maybe I had an infection started on the inside of my eye.  My vision blurred and I had color desaturation.

The BEST thing to do is go to your eye doctor and get checked out. That is the only way to know for sure.

LA

[jensequitur]

So does optic neuritis present with a horribly red, painful eye?  Or does it look normal?

My right eye became very bloodshot a couple of days ago, and it still hurts like there's sand in it.  I wear contacts, and because of my fatigue, end up sleeping in them more than I should.  i woke up from a nap and my right eye looked like I had pinkeye.  It felt like I had scratched the cornea.  I have a little bit of color difference from left to right (right is more intense in color) but that's been off and on for a couple of years.