Hi, thought I would just chime in to say that I did have INO which presented as diplopia and nystagmus. I do have a visible lesion on my brainstem which is where the lesion causing the INO is located. I had persistent double vision for about a year, it is now probably 95% better which is as good as it's going to get. Follow up MRI's indicated that the brainstem lesion is still visible and unchanged, despite the improvement in my symptoms. My neuro explained that the improvement is more likely due to other undamaged nerves taking over function from the damaged nerves, ie: brain plasticity.
I know this doesn't answer your question but thought I'd just share my experience with INO. BTW, it was onset of the double vision plus a vast array of other clinical symptoms, an MRI showing lesions on brainstrem and c-spine, and an abnormal LP (no O-bands though) which led to my MS dx in 2007.
How does your INO present clinically? Do you have double vision?
Exactly. Eleven weeks ago yesterday woke up with double vision and ataxia, was hospitalized for the IV Solumedrol and left with a dx of MS. After getting home and having the steroids wear off, noticed numbness and tingling on the left side, including my face and tongue, causing some speech difficulties. Now the neuro has backed off the MS dx since none of my MRI's show plaques, and says probable MS due to my documented history and neuro exam. He states the INO is causing my double vision, and can find no evidence of a stroke, major or minor. "Given your age (60), we need to rule out a stroke". Done! So, what is it if not MS? Guess I will have to ask that question when I return for followup. Thanks for chiming in, any opinion appreciated! SDSAM
Well, you are caught in the conundrum of the normal MRI with an abnormal CNS.
If you have INO or BINO then you have lesions in the brain stem involving the nuclei (transit hubs) where the cranial nerves that control eye movements communicate. Period. We KNOW you have lesions. These count for one clinical lesion in the McDonald Criteria. You are PROOF positive that the MRI is imperfect and that lesions can well be invisible to it.
I don't remember all of your story, but if you have had two or more episodes of symptoms that are very suggestive of demyelination AND you have findings on exam that show evidence of two or more lesions (damage) in the central nervous system which are separated in space AND have had a thorough "rule out" of the MS mimics -- Then you fulfill the McDonald Criteria for the diagnosis of RRMS. PERIOD.
At this point if someone has had two clear episodes and has two lesions as seen on exam or other testing, they look at the MRI for corraborating evidence. The real experts in MS will tell you that MRI evidence is desirable and that it need only be "consistent" with MS. A lone, measly lesion somewhere (consistent) will do. The reality is that few will stand up and make the diagnosis. Weenies!
Well, that is the reality. But, for example, hyperreflexia and INO prove that the spinal cord and brainstem lesions are present. Those should be able to stand in for a category of KBNYV - Known, but not yet visible, lesions.
In my never-so-humble opinion.
Thanks for the input. This episode was my second major one, the first was similar to this one, but this time had a significant prob with ataxia. Followed by numbness and tingling, leaden left foot feeling, etc. In between had several episodes of numbness and tingling, and even a "probable MS" opinion several years ago. On followup exam I was also found to have hyperreflexia of the lower extremities, so I would have involvement of both the brain stem and the spinal cord, correct? I can see why some are so frustrated on this forum! Thanks again! SDSAM
Well, you make criteria for the Diagnosis. Since your neuro is so sure of the likelihood of MS, he should have you on a med. Are you? If not we can formulate some questions to put his way. Im MY mind (and remember I am not a neurologist, but I read alot and am a physician. And I stay in a Holiday Express once with a bunch of neurologists - as if!) you qulaify in full for the Dx and should be on treatment.
They started me on Avonex while in the hospital in Dec, been doing my shot weekly. On followup in late Jan was prescribed Baclofen for the muscle spasms in my left calf and foot. So I am definitely being treated for MS, but they are waffling on calling it MS. While I was in the hospital I asked the doc what it was that put me in the hospital, he in turn asked me what I thought it was. I said MS, and he said "me too", now he writes probable MS. Don't make any sense to me, but I am a black and white thinker I guess!
I know this is old, but reading it caused my heart to jump into my throat.
I'm 29 years old and I've had constant double vision for two years now. I had a bout of double vision in 2007 that resolved on it's own after two weeks.
I'm seeing my neuro-eye doctor again next week after two years of frustration (negative MRI, negative blood, negative spinal tap, etc.) and no relief, so I was looking through my medical records to see if there was anything I wanted to make sure and ask her about. On her report from two years ago (she was the first doctor I saw) she has a dx code for INO and VI nerve palsy. My neurological exam also showed hyperreflexia in one leg. This has been noted by all the doctor's I've seen. I also saw that there were noted abnormalities on my MRIs that were written off as artifacts (on upper T spinal cord) and "within normal limits" (asymmetrical T2 signal adjacent to left occipital horn related to the ependymal apposition - I understand the word "to" in that sentence...).
The INO was never discussed, and there were more abnormalities on her eye exam that were also never discussed (scotomas, abnormal VEP, etc.). I've been beside myself going so long without a diagnosis and no help - prism lenses allow me to live a mostly normal life, but no one seems to care about pain or finding out why this is happening. They've told me it's not MS, it's not a tumor, stroke, increased cranial pressure, diabetes, etc. But something is wrong, and things are showing up on tests. So what's the deal?
/end thread jack, thanks for any insight anyone can give me.
Hmmm. I had INO as well (during my original, multi-focal "lapse" - it can't be "re" if it's the first, right?!) and was put in the hospital for nine days because of it - they wanted me to get an MRI as soon as possible, and wouldn't you know it - the magnet was on the blink. And if I'd left, I would have been in the far more slow-paced 'out-patient' waiting list. And they wanted to know what was going on up there!
But this also meant I could be given my first steroid infusion treatment in hospital and all the other tests were knocked out in the same visit (lumbar puncture, CT scan, neuro exams, blood work and results, etc.)
By the time I had the MRI (textbook positive) and left, all the i's were dotted and t's were crossed for an MS diagnosis once I had a second relapse (5 weeks later).
My INO cleared up after a few days of the corticosteroid infusions, but this particular manifestation was taken very, very seriously due to my age and sex (female, age 30 at the time).
INO has only so many things it can be brought on by, and seeing as I wasn't a drug abuser, didn't have tertiary syphilis, malignancy or evidence of a stroke (as per the CT scan done the first night), it was essentially explained to me as a fast-track to a CIS diagnosis. And this was *before* my MRI sealed the deal.
I do not understand your treatment. My afternoon three years ago went like this - a walk-in appointment to SpecSavers (a chain of opticians), referral to emergency eye-ear hospital, tests there led to further referral to emergency department at the largest nearby hospital, return home 9 days later. That's how seriously INO was taken by a regular old optician. Not even an optometrist, much less a specialist.
I have no medical training, so I don't claim to know what your ultimate diagnosis could be, but my heart kind of breaks for you that you've lived with this for so long and I shudder to think about receiving different treatment when I was scared and frustrated and just wanted to bloody see straight!
Get your war paint on for that appointment next week! (I don't mean battle with your doc, just find some inner strength to really advocate for yourself. I think there is more they could be doing for you)