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Unexplainable Visual Disturbance... Help?

So right from the start, I'm going to say that this post is probably going to be confusing and long, and the symptoms may even be unheard of, but I'm going to try my best because I desperately need the help and the closure of potentially knowing what's going on. I'm going to put all of the information on the table.

Beginning about two years ago, my then-perfect vision was suddenly altered for seemingly no reason; at first it felt like my eyes were looking at two different images even though they were focused on the same object, then it progressed to my right eye succumbing to transient blindness- it wasn't terrible, but it was a mild "graying" of my general field of sight and I couldn't comprehend things were in front of that eye even though I could see it. The only time my right eye could see things correctly is when the object was right in the center of the eye- even though it had peripheral vision, I couldn't discern objects using peripheral vision in that eye. However even the items it could see correctly were blurry compared to my good eye. It was also extremely sensitive to light, and these symptoms persisted for a while. During the episode, I did go to an optometrist(gave me a dx of "Dry Eye" because the slit lamp showed no problems in the eyeball, so he didn't think it was serious) and ophthalmologist(whom took me seriously, likely because this was my second time at the office, and did more tests; like the optometrist, she saw nothing wrong but she did tell me it sounded extremely akin to MS and dx'd me with Optic Neuritis). Long story short, I met with a Neurologist and went through MRI and spinal tap, was dx'd with MS. Unfortunately that story was far from over.

About a month or so later my ON actually started to heal and I regained much of my visual clarity to almost pre-ON levels; but I guess either the MS or my stress at learning of my MS caused damage somewhere else, and it started a slew of new visual disturbances that plague me even now. It initially started out as me seeing persistent specks in the center of my vision; these specks were not floaters and never went away, they were just near undetectable unless I had accurately lighting. For example, me being in a dark room with the door slightly cracked open with the light of the hallway outside of the room would give me just enough vision to be able to see specks of small particles floating in and out of my central sight, like they were actually suspended in liquid. I only assumed it was MS related and ignored it because I was just starting disease modifying drugs. Then some time later my vision started appearing as if I were looking at everything through a fast revolving fan; I could see everything in front of me but my vision was either fluctuating from darkness to full vision extremely fast, or very weak, either way it was kind of like viewing everything through a low refresh-rate display. It was also bilateral to both eyes, unlike my initial ON. Eventually I did recover from that and the low refresh-rate phenomenon stopped, but I guess whatever issue I had finally stabilized and evolved into what I've been experiencing ever since.

This is the part where I need help finding out what's going on, and maybe point me in some good directions as to what has happened and what's going on now: so now I have new symptoms. The main symptom is a persistent visual disturbance that is basically like looking through a clear film or water; there is a transparent disturbance that looks like the air is moving but I can still see the motion of whatever it is, however upon me spending more time with this disturbing aura I can describe the aura more like random transparent patches of a slightly grainy texture that constantly flutters/vibrates/flickers. It's bilateral and consuming the entire field of vision, but I think my initial ON eye has it a little worse but it could be because that eye is more blurry compared to my other eye. It also has the characteristic of taking different shapes, so I can literally keep my vision focused on one object and see a part of the vibrating texture leave my central vision and appeare somewhere else, but it vibrates fast enough that it can enter it again within a second, but like I said before the entire phenomenon is in my complete field of vision, so I constantly see mostly transparent, but plentiful areas of random sizes vibrating and changing shape and such. To further help you all visualize this, when I am looking at an object that has my complete focus or something large and has the same color all around, like a painted wall, then the distortion does appear like it's just a noise. If I'm looking a small object to where the rest of my peripheral vision is able to see varying colors and contrasts, I'm able to see the extent of spots and that it's varying in size, positioning, and shape, but it still dominates my entire vision. Depending on the contrast of whatever I'm looking at, the vibrating spots can appear in a white color and almost look like a light rainy mist. I can also defocus my eyes and see the mostly transparent scotoma, for lack of a better word, a bit more detailed and that's how I can see that the vibrating spots are kind of grainy, like TV static. I'm not experiencing a floater, I'm not sure if this can be considered a migraine aura since it's extremely persistent and has not turned off since I first saw it last year. I initially confused it for visual snow but then I realized that visual snow is characterized by small dots moving in a particular pattern or flickering in the same position- this doesn't look like that. However the other smaller symptoms that accompany this main problem are: photophobia(this makes me think that I may be suffering from retinal thinning), frequently recurring afterimages, photopsia(randomly shows up as black spots and vanishes, like an old video film; also the black spots appear whenever I make a fast transition from one contrast to another, like from a light green room to a dark blue room), and finally if my eyes make sudden movements, I experience another visual disturbance that consists of some part of my vision flickering with a dark hue, like there's too much fluid in my eye and something can't compensate its motion... Also making me think that something is weakening... but it's in both eyes.

I've tried Google for this particular main symptom but I can't find anything quite like it, and I see nothing that spans my spectrum of symptoms... So maybe I'm explaining my symptoms incorrectly or something? I just need help and direction. I already spoke to my Neurologist about it more than a year ago but he was confident that Ocrevus would help restore vision, which there are reports of but my vision hasn't improved at all; infact I think my vision is slightly worse. I've already called my Neurologist to speak with them and they'll call back Monday but I'm afraid that I won't find an answer/dx from this, or that I'm explaining it wrong and will only mess up the process.

I've given the entire history of how this has evolve so maybe you all can getter a better idea of what I'm going through, and maybe someone would be able to see how my previous symptoms connect to my current situation and show me something I couldn't see, no pun intended. Anyone have any ideas? Any help would be appreciated, and thanks.
1 Responses
177275 tn?1511755244
If you have multiple sclerosis and have had a documented case of optic neuritis then everything you describe can be due to MS.    MS as you know is a diffuse disease that affects the white matter of the brain. Because it is so variable as to where it occurs and how severe it is where it does occur it causes all sorts of weird and bizzare symptoms that wax and wane.  about 30% of MS starts with the eyes and about 75% have involvment of the visual system.
2 Comments
So there's a real chance that my particular set of symptoms are unique to me, and that I may have little recourse on trying to stop them, I assume?
If the underlying problem is MS then the solution is to address with MS with a neurologist and neuro-ophthalmologist.
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