I had my first bout last year - which led to my diagnosis. It was on my optic chiasm so it affected both eyes, one much worse than the other.=
After almost a year the one eye is at about 100% and the other comes and goes. I did notice last week that it had gotten worse again in the bad eye. I went to the eye Dr. (on my neuros recommendation, and they told me they cant see any inflammation and its not a flare. Mind you they never saw inflammation the first time either. I also have not had pain either time.
Has anyone gone through this? It makes me feel so helpless that I know something is going on and since there is nothing they can do, I just wait. Is this just a part of life now?
Thanks for any shares or insights on the matter.
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Greatful25
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SAMESAMESAME!!!!! Super pleased you exist, hallelujah, I’m not the only (also sorry you’re with me because it stinks). I’ve never had optic nerve inflammation on the optho’s exam or on my MRIs. My last episode I saw optho, had acuity in the dirt, and high pressures (again). Have a new drop for the pressure, but zero change in my vision (just like last time they tried this and I had active brain and spine lesions). Both eyes have been affected, but one has central vision loss. I email my neuro because I can’t see to drive, and she orders steroids and scans. Steroids work for a bit, scans fine, and now she’s upset because my old area of central vision loss has increased. She orders an orbit scan. Meanwhile, I have my optho check for pressures to evaluate the drops, and I’m good to go. Orbit scans are fine. What? Great, I guess, but now my neuro wants a second opinion on my scans (and also a host of other body things, but this alone has really bothered her). Also, I’ve never really thought ON was all that painful…perhaps because I’m never inflamed or maybe I have some other eyeball disease entirely (but one that will respond to steroid 🤷♀️) because it’s not typical ON, except for the lack of a yellow flash back when they examine the front of it. I have not yet read the orbit report for myself to see if the nerve is narrow/atrophied.
Ty so much for sharing! If I learn anything, which I don’t expect, I will let you know. It’s a freaking mystery that’s haunted me for 20 years now. Sorry for writing a book, it’s been a looooong time and I’ve never had anyone I could relate to on this. I hope you contact your neuro again and get checked out.
Hello I’ve not experienced that but sometimes right eye will fog over
I think my glasses steamed over take them off TADA still forged eye
Lol Everything is so random one day you can walk with your walker one day you can’t one day you can eat due to tremors cm five minutes you can’t everything is so random but it’s hilarious I just make jokes all the time and roll with it . what can you do?
Pray consistently in my thoughts is our father in heaven
Optic neuritis was my first major symptom of MS. I too had no pain. The bout lasted for more than 6 weeks more than 30 years ago. My left eye has lost some color acuity, and both eyes now require glasses with fresnel prisms to correct for double vision. When ever I am over tired or over heated, my vision becomes cloudy with no obvious inflammation but a slight achiness in the muscles around my eyes. This cloudiness will last for several days then disappear, only to return the next time I am too tired or overheated.
Vision issues were my first MS symptoms. They started nearly 20 years before my diagnosis. Double vision, color vision changes, random changes in acuity. I thought I was going nuts. My optometrist referred me to ophthalmology several times where I was inevitably told that there was nothing wrong. A couple actually insinuated that I was attention seeking. When I eventually saw a neurologist he assured me I wasn't nuts - I have ON as part of my MS nonsense. I've never had a lot of pain with it. My R eye will start to ache and I know what's coming. It also doesn't show up on MRI's. The bottom line is that I just have to live with it. I'm a nurse so that scares me a bit. I've learned to laugh at it.
I must be kind of an expert, having had optic neuritis 7 times over the years. What really interested me was how far the diagnostics have come. From a manual laser pointer on a sphere, now tell me when you see it, to now almost a video game computer run diagnostic that results in a perfect picture of your loss in vision, all mapped out and printed out for you. Also went from treatment by hospitalization in a "sterile" environment while given massive doses of steroids, (to try and kill off/reset my immune system I was told), to only monitoring. The neurologists and ophthalmologists had different philosophies. Neuros wanted to aggressively attack. Ophthalmologists were against steroid treatment fearing permanent general damage to the eyes. After several cases, learned to just wait them out under the ophthalmologists (various doc's) treatments - (monitoring), and waiting to see what I would be stuck with. Also learned I could almost create my own vision loss maps by staring at waves on a lake lit by the sun in the morning while fishing. Anyway, after almost a decade of optic neuritis events every so often, they stopped. But the permanent losses remained as I was always told they would, accumulating with each new event. I've mentioned before on this site, drastic diet changes eliminated or repaired those "permanent losses" as the specialists said it would never get better. It took years of the diet changes with almost insane diligence to sticking to it, but it paid off. It's been 6+ years without a relapse of any kind, and my remaining neurologist believes I may be done with relapses. Now if I could only get rid of the 1001 things M.S. did leave me, though I have made gains, and I won't give up making them. My cane now hangs on a wall like a trophy fish. My fatigue is better. Still very fragile, and don't ask me to try and do an evening thing again, because that's definitely something I can't do. Always try and see the positive, not the negative. Like yes, I still have maybe 30 seconds to find a bathroom when my brain let's me know it's time to go, even though I just tried but 5 minutes ago, but my GPS tracking skills are so good now, I can almost always find the nearest bathroom, or at least an appropriate tree when walking a trail. Haven't had an accident in a couple years! Sounds great???? Right? Or those things that aren't getting better, well you can just ignore them, or forget them! Then that pesky neurologists' list will remind you the next time you have an appointment. Tip, ask if you can simply check off what you don't have, in lieu of what you do have on that list. It's much easier/faster! OR Just write in big letters atop of the typical 2 page list "I DON'T HAVE THESE CHECKED ITEMS - I HAVE OR HAD THE REST SINCE I SAW YOU LAST" You will save a whole lot of ink if you're like me.
Optic Neuritis gets much easier when you learn to ignore it the best you can. Now that thing, where your vision scrolls like an old TV with a broken vertical hold (think the days pre solid state - tubes rather than transistors)! Oh God I'm old? That's a nasty one. And don't ever try driving with that! Just get a chauffeur if you're still working and can't stop your dozen or so calls a day. Luckily as the boss, I could assign one, but I put my wife to work, that was nice. That too will pass.
Luckily, that was a one relapse event as that was something!
Retrobulbar optic neuritis does not present with any visible swelling of the optic nerve to an eye doctor. An optical coherence tomography test will show any nerve damage. It is the best test to monitor any optic nerve damage progression. Did you get that test ?
This was my first symptom before diagnosis. Ophthalmologist said he didn't see anything that it was my meds. I argued that because I had been on them for quite awhile so he finally gave in and sent me for brain mri. Brain mri showed lesions that were signs of ms. Referred to Neuro for more testing.
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MRI didn't show active disease
