I wanted to share my experience with optic neuritis because it might give hope to someone who is earlier in their recovery.
I had optic neuritis in my right eye in October 2020. At the time, I lost my vision almost completely, I could only see some light. Thankfully, my vision did recover, but for years it never went back to what it was before. I would say it improved to about 75% of my original vision, and it seemed to stay around that level for quite a long time.
What surprised me is what has happened more recently. My optician tests my eyes once a year, and at my most recent appointment they noticed a significant improvement compared with previous years. For some reason, the recovery during the past year has been greater than what I experienced in years 2-4 after the optic neuritis. Our brain finds a way!
My vision has continued to improve slowly, even all these years later, and it has now returned to 20/20 with glasses.
I know recovery from optic neuritis is different for everyone, but I wanted to share this because many people say that most recovery happens within the first year. In my case, improvement continued even 5 years later, and the most noticeable improvement actually happened recently.
So if you are earlier in your recovery and things seem to have plateaued, it may still be possible to see gradual improvements over time.
Hi Maria, that sounds like excellent news - congratulations. I hope it continues to improve or, at least stay good for you
Mine isnāt optic neuritis - Iām classed as partially sighted because of the lesion on my Occipital lobe. It may never change but, itās good to always have a little faith
The sun is shining so, enjoy your day and, Take care x
Hi Maria, glad to hear it. I had ON in each eye about 5 months apart. One recovered completely, took about 2 years, the other never fully returned to pre-ON levels.
To be fair, I didnāt expect it to happen (I am 46 years old). I think that part of it is down to remyelination, as well as neuroplasticity. Honestly, I never imagined it would get better several years later. I havenāt done anything special. I havenāt been taking anything special other than my DMT and vitamins, but it seems that yes, there is a chance of recovery several years after the incident.
It must have been emotionally challenging for you to have ON in both eyes. It must have been terrifying. I hope you continue seeing improvements.
Jon, your case enlightened me as I wasnāt aware that lesions could affect eyesight unless in ON. Thank you fir sharing. I hope you get to see some improvement over the years.
Iāve just noticed that weāre the same age (Iām also 46. Apparently my lesion is a big āun that also goes onto my parietal lobe. It seems to cause issues like getting lost easily, face blindness and, almost no left side peripheral vision in both eyes. In my recent diagnosis letter for RRMS it looks like they suspect that Iāve already had a relapse. I donāt hold out much hope of it ever improving but, stranger things have happened so, maybe . For now I just adapt and keep going (things could always be worse)
Hi Maria, thanks for the reply. It was a very difficult time. There was a period where I had very poor vision in one eye and none at all in the other. Fortunately with a course of steroids and some time, things eventually got better. Those 2 episodes of ON led to my RRMS diagnosis 7.5 years ago. I was 50 years old then, so relatively late to the MS party.
The good news is, Iāve been NEIDA ever since on annual MRIs with no real symptoms to speak of. I have a 0 EDSS score too. My DMT has always been Tecfidera.
Sending you a virtual hug. I know it nust have been extremely stressful for you. I couldnāt work properly with one eye, even though I didnāt want to lose my job, so I carried on working. The ON was a very stressful, very dark period of my life, and if happened during the second lockdown, so I had double the drama. I think you are going strong. I have RRMS, but I have some mobility issues, mostly because the second relapse affected both my hands, that went numb for over 9 months. We always find a way to keep going. We always find strength from within somehow.
They can. I had a brain lesion that made a quadrant of vision drop out completely in both eyes. Fortunately it healed and my visual field returned. It was a very odd experience.
That is good to hear Alison - thank you for sharing. I suppose there may be a little hope for mine to improve at some point - I assumed it was permanently knackered as thereās been no improvement at all in just over 12 months
Thank you so much for sharing your story, Maria. Itās incredibly encouraging to hear that recovery can continue so far beyond the typical one-year window we often hear about. This will definitely give a lot of hope to others who feel like their progress has stalled.
x
. For now I just adapt and keep going (things could always be worse)