Recurring Optic Neuritis?

[anon07072023]

Hi Everyone,

Does anyone out there know if recurring optic neuritis is typical for those with MS?  Also, is it normal to get flare ups of it off and on once you've had it?

This is the 3rd time I've had optic neuritis since Feb 2009 - so about an 18 month time span.  First time was my left eye in Feb 09, then in my right eye Aug 09, and now my right eye again.  

Thanks,
Kelly

[anon07072023]

Thanks everyone for your comments.

Pablo, I was wondering if you're taking any DMDs right now? If you're not, you may consider starting them.

Yeah, during my first appt with the Rocky Mtn MS Ctr (University of Colorado Heath Science Center Dept of Neurology) neurologist, he pretty much said that I meet all the McDonald criteria for MS.  It takes me about 1 1/2 hours to drive to see him, since I'm in Colo Sprgs.  But he's a lot better than my former neurologist here in town.  So, I'm willing to drive to Aurora to see him.  I want to try the 3T MRI, too, to see if they're able to see any more lesions - especially in my spine.

I think Quix was saying even as high as 80-85% risk of converting to CDMS after about 15 yrs later (with lesions).

[Pablo_Morphy]

I'm an 'optic neuritis' + paresthesias clinically-isolated-syndrome patient right now.  In fact, my first symptom ever is still a mystery:  Two symmetric scotomas (holes) towards the margins of my visual field.  They arrived one bad day 11 years ago, and never left.

My CIS however was diagnosed following (another?) episode of optic neuritis in April, this time in the right eye. I got IV solu-medrol for that.  A couple of weeks ago I felt pain behind both eyes for a week, but it went away without treatment.

[COBOB]

Based in the ONTT (Optic Neuritis Treatment Trial,)  "the 5 year risk for Clinically Definite MS (CDMS) is 16% for no lesions, 37% for one or two lesions, and 51% for three or more lesions."  At 10 years, the no lesion risk increased to 22% and 56% for one or more lesions.  There may be more studies since the ONTT, but I think these are the numbers most often quoted.

Bob

[jensequitur]

I seem to remember that 60% of those with ON convert to clinically definite MS.  

[COBOB]

I started with an Ortho doc for the harm and hand pain, because I had my left shoulder reconstructed twice in the 1980's.  Then lost my vision and went to an Optical Group in Cherry Creek (Denver) and they diagnosed ON and sent me to a Neurologist/Neuro-Ophthalmologist in South Denver (now I live about 20 Miles Northwest of downtown Denver, so that Dr was about 45 Miles away).  He started IV Methylprednisolone 1 Gm a day for 3 days and they did the MRI on the 2nd day.  Then he ordered a VEP that came back abnormal for my right eye where the ON was diagnosed.  He said watch and wait, so I figured I'd transfer my care to the University of Colorado Heath Science Center Dept of Neurology in Aurora (its about 20 miles away.)  They did the LP.  Now, they will be doing the 2nd MRI with MS protocol in a 3 Tesla bore in a few weeks.  They saw one oval periventricular lesion in the T2 weighted studies on the MRI, but complained that the movement artifact made the study pretty useless.  This time they said 20 mg of valium (I'm a big boy 6'2" 280#  50" chest - tight fit in the bore.)  They did see a few blown disks in the right cervical slice, but that doesn't seen related to the issues in my left arm and hand (or both feet for that matter.)

Just waiting to see.

Bob

[anon07072023]

Hi Bob,

I've been meaning to get with you. I remember seeing your post somewhere about going to the Rocky Mtn MS Center and how they wanted to watch your rate of getting lesions. I also just started going there - my 1st appt was on July 28, then I had a follow-up at the beginning of Sept. I wondered if we were seeing the same doctor, because my doctor there said the same thing to me - he wanted to wait of giving me the Copaxone until he can determine my lesion rate.  

I have 6 lesions in my brain (along with 3 black holes), and 2 in my spine  - 1 official bout of left side weakness, and 3X optic neuritis.  I've seen either an MS neurologist or an opthalmologist thru all of this. I had IV solumedrol about 15 months ago for my first bout, but they didn't do the entire treatment because I'm hyper-sensitive to the steriod.

Thanks,
Kelly  

[COBOB]

Lesion load and optic neuritis (ON) are pretty hard to correlate.  The optic nerve (cranial nerve 2 - CN2) goes from the optic disk of each eye through the cerebrum all the way to the vision centers of the brain in the rear of the cerebrum.  It is one of two cranial nerves that are cerebral.  The remaining 10 pairs all terminate at the brainstem.  Recurrent ON can occur in any recurrent demyelinating disease of the cerebrum.  MS would fit that criteria.  Recurrent ON needs to be addressed by an Ophthalmologist, Neurologist, or Neuro-Ophthalmologist.  The reason for this is that recurrent injury to CN2 can result in a necrologic loss of vision.  If the same "eye" (we perceive it as left or right eye, but the it is really the left or right optic nerve) is hit repeatedly, there is a decreased chance that the nerve will demyelinate and recover.  If discovered early, most Dr.s will treat this with a course of steroids.  

At least that  is the explanation I got from the Neuro-Ophthalmologist when my adventure in Limbo Land started.

Bob

[anon07072023]

Hi Deb,
Thanks for your input. I've never heard of Uthoff's, so I'll have to look that up.

I supposedly have 6 lesions in my brain, 3 black holes, and a lesion between C4-6 and between T9-10.  I've only had one c-spine MRI, so I'm not sure if I have any more there, and my last t-spine was about a year ago. I think my doctor is unsure about which - MS or (neuromyelitis optica (NMO) for me. He did start Copaxone though, however, he said that he's considering treating me with Rituximab, which would address treating me for both (which I don't think I'm going to agree to take).

My lumbar puncture was negative and so was the test for NMO - but both tests can give false negatives.

I don't want to eventually lose my vision. I hope that's not where this leads.

Thanks again,
Kelly


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[Deb61]

Hi Kelly, I'm sorry to hear about your 3rd time with ON!  I don't think there's such a thing as typical for MS because it's so unpredictable.  I have heard that ON is typical early on in MS; however, I've had ON twice, and it was not early on when I was diagnosed.  Looking back, I've have had eye problems years earlier.  I continue to have eye problems, and I'm having some more symptoms of doubled and blurry vision creeping back in.  

I don't know the answer to whether or not that it's common to have flare ups of it off and on once you've had it.  I was just asking the same question!  I have gone in before, though, thinking that I had another problem with ON, and I was told that it was probably Uthoff's.  

Where are most of your lesions?  Do you have most of them in the brain or spinal cord?  There is a demyelinating diseases that ON is more common in--Devic's (neuromyelitis optica), but I would think that your neurologist would have ruled this disease out.  

Well, that's the extent of my knowledge on the subject, hopefully someone else can contribute something better!  I hope you get over this last bout of ON quickly with no lasting problems!

Deb