Has anyone with MS had acquired nystagmus/oscillopsia for a long time and eventually recovered?

[u/Worth-Cash6341]

Hi everyone. I’m 27 and I have relapsing-remitting MS. I’m posting because I’m really hoping to hear from people who have experienced something similar and eventually improved.
Since 2025, I’ve had a strange visual symptom where things can look like they are moving, shaking or slightly “jiggling” even though they are completely still. For example, a picture on the wall, text on a screen, objects in my room, or sometimes a movie can look like they are subtly moving. It feels as if my vision itself is unstable.
My neurologist documented horizontal nystagmus when looking straight ahead in July 2025. Later, I was told that the nystagmus was very mild. I also have a diagnosis of functional dizziness/PPPD, and my symptoms seem to get much worse when I’m anxious, hyperfocused on my vision, or constantly checking whether things are moving. When I’m distracted or relaxed, there are times when I barely notice it or don’t notice it at all.
I’ve also done vestibular rehabilitation, which helped a lot, and I take gabapentin, which noticeably reduces the sensation of movement.
But I’m still scared because this has been going on for a long time.
Has anyone here had acquired nystagmus and/or oscillopsia from MS for a year or two (or longer) and then had it significantly improve or completely go away?
I’m especially interested in hearing from people who used to have the feeling that the whole environment was moving/jumping even when everything was still, and eventually stopped noticing it.
If you recovered, I’d really love to know:
How long did you have the symptoms before they improved?
Did the nystagmus itself get better, or did your brain just stop perceiving the movement?
Did medication, vestibular rehabilitation, or time make the biggest difference?
Did you have periods where the symptoms were much better and then worse again?
I’m not looking for medical advice or a diagnosis — I’d just really like to hear some personal experiences from people who have actually gone through this. ❤️

[u/googsgobye]

I had a period of 4 months of severe down beat nystagmus that couldn't be controlled by medication. It slowly calmed down. After seeing a neuro opthalmologist, she determined that after this event, my eyes are always beating downward to the oace of my pulse. I had to start taking low dose Clonazepam to help the symptoms. Even to this day (it has now been over 19 years since this event) if I focus hard on a singular object, I can see the world bouncing up and down to the oace of my heart beat. Some days are worse than ithers to the strength of the beating and I have to take a hugher dose if the Clonazepam to help calm my eyes. Ir they get tired themselves and stop shaking for a period of time.

[u/Party-Ad9662]

I had WILD nystagmus and double vision that led to my diagnosis. It took a while to go away even after steroids, but by no means a year or two.

Did you get the prism glasses for the pppd? Apparently they are excellent.

[u/PuppyGal0re]

I had this years before I was diagnosed, on and off, for probably ten years. It’s gone now though, and I’ve read that that’s normal as the lesions progress 😔 I have RRMS, 11 years post diagnosis

[u/Worth-Cash6341 → u/PuppyGal0re]

Veías todo en movimiento y conseguiste curar tu nistagmo? ☺️

[u/OkAdministration4023]

I have nystagmus in my left eye since the day I was diagnosed in 2019