Hi
I got diagnosed with optical neuritis In November and I’m still recovering, I’m concerned because some days my eye seems like it’s getting better and some days it seems a lot worse. Is this normal? As I thought by now things would start getting back to normal. My peripheral vision has always been fine. But some days in my left eye which is the damaged one, things seem even more blurry and cloudy and fuzzy, it’s been 4.5 months now and I’m not seeing any signs of recovery, I had steroids for it when I got diagnosed. Is this normal? Cause I’m worried my eye will never be the same 
I can’t say whether or not it’s normal - everyone is different I guess. If I were you I would contact your MS Nurse and see what she/ he says. ( I doubt if anyone on this forum can say what is normal and what is unusual and/or concerning so, it’s best to ask the health professionals).
It’s normal. I was the same. The bad eye was going from ok to very blured vision within hours… and it was a temporary situation, lasting a few hours, then it would go back to my “normal bad”. While you recover from ON, things such as sickness, stress, heat, exercise, fast walking, fatigue, will affect your eye. This is not a relapse but a temporary thing. It has a name, I don’t recall it. If it goes really bad and you don’t see improvement within 24 hours or so, then you may be getting a relapse, i.e. a second ON incident that is isolated from the first one. Talk to your doctor.
After my ON my eye took about 8 months to recover. Recovery was slow. I was almost blind in that eye, but I recovered 80% of my vision. With glasses on, my vision is pretty good as we speak.
Are you taking vitamin D? In my case, I truly believe that a very high prescription of Vitamin D speeded up the recovery. My vitamid D had been extremely low. Ask your doctor.
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https://www.mssociety.org.uk/sites/default/files/2022-07/Hot%20and%20cold%20(Temperature)%20May%202016b%20(FR).pdf has the answer to your question. Thank you. 
I had 2 bouts of ON four months apart, one in each eye. It took 18 months for my eyesight to recover fully and one eye never came back to completely 100%.
It’s common for vision to fluctuate during optic neuritis recovery due to factors like stress and fatigue. Recovery can be slow, but many see significant improvement over time, sometimes with the help of vitamin D.
I use nicotine spray regularly, do you think this is making it worse?
It may be an issue. I was told to stay clear from smoking and nicotine. How are you feeling today? Please stay positive.
I was diagnosed after losing my vision in my right eye. It has improved over the years (it started in 2019) and my vision I would say is back to normal. When I am tired things can get a bit fuzzy; and that eye just feels different from the other- bigger or something, it’s hard to explain.
Unfortunately I have just had results of an MRI and there is abnormal signal along that nerve again, and my eye does feel a little painful. Hopefully I won’t get another episode of ON but only time will tell! Hope you are feeling better, it took over a year for me to improve, but I chose not to have steroids.
I had the same. I recovered 80% of my vision but it took over a year. They did not give me steroids either. Have you talked to your MS nurse? You know, with an excellent pair of glasses, after the optic neuritis in 2021, my vision is a lot lot better. I have issues with depth perception though.
Hi @rickyantwhite ,
I also had ON in my right eye over 4 months ago now. I also had the steroid treatment the day after it started. I have had no improvement in my central vision and after seeing a Neuro Ophthalmologist a couple of weeks ago he said that due to the damage and pallor of my optic nerve it would be very unlikely to get my sight back in that eye.
I don’t have MS but they are running tests. I have also been to an optician who did try to get lenses that could help but with no luck. My other eye is fine so far and I have good sight in it so its carrying me through!
I wish you all the very best,
Laura
Hi I’m sorry to hear about your eye and the damage it’s done
I’m assuming a MRI has been arranged or been done for you? If not then it definitely should be, they may diagnose you with “clinically isolated syndrome” which just means it’s the first attack, and they will wait to see changes on a MRI to look for demyelination on your brain, if more than one area is damaged or you have any other symptoms with your eyes then they would diagnose multiple sclerosis.
I wish you all the best, and please do get a MRI done soon as you can if you haven’t already. Good luck
Hi @rickyantwhite ,
Yes I have had an MRI and CT Scans. The MRI showed multiple lesions but only one with MS characteristics. They did a lumbar puncture a week ago as well but havent had those results yet.
I am just trying to keep going on as normal in the meantime!
Ah ok, my lumber punture was normal. So they didn’t diagnose it at first, then two months later I had another eye attack called palinopsia, and they did another MRI and they found another lesion so they diagnosed me with MS. I started my treatment back in April. I was absolutely plagued with fatigue and still am now, even if your lumber punture is normal, still push for a diagnosis, I was under the impression that if a lumber puncher was normal then it ment I don’t have MS, but that’s not the case, if you have multiple lesions and you’ve had optical neuritis I’m gob smacked you haven’t been diagnosed yet, I know this sounds horrible but hopefully your lumber puncher is not normal, that way you can get your diagnosis and start your treatment asap. 
Hi @rickyantwhite ,
Just thought Id let you know the lumbar puncture result is clear! I’m obviously delighted not to have MS but do wonder what has caused my optic neuropathy and other symptoms. I’ve now been put on a watch list and will just visit the neuro clinic every few months. Although I had multiple lesions only one showed MS characteristics so also not sure what happens with that! My evoked potential test isn’t being done now either due to the negative LP!
I will just have to try to forget about the whole ordeal and get on with things as it seems the investigations are over.
It makes me wonder if the LP effectively gives them a yes or no answer to a diagnosis then why not do it at the outset to save us all going through months and years of other testing, appointments and stress!
I hope you’re feeling well and wish you all the best!
Laura x
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My optic nerve in my right eye was/is damaged due to MS- it’s very pale instead of pink & healthy - that was how I was diagnosed over 20 years ago - but it has stayed pretty much the same and I wear glasses anyway - my eyesight is much better in my left eye - optic neuritis can be a big indicator of MS
Hi @Redman,
Yeah they told me mine was very pale and it was unlikely Id wver gwt full sight back.
It just seems unfair to me that there may be drugs available to help repair or slow down the process to potentially stop it happening in my other eye and because my LP was clear and I have no diagnosis they are happy to just let me sit and wait on something else happening before something is prescribed. There’s no logic in it!
Ranting today but its good to get it out 
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Lazza this is exactly what happened to me , they should of diagnosed you with clinically isolated syndrome, which basically Is one proven attack, and they wanna wait to see if there’s another relapse before they give you the treatment, it’s my understanding this is because they need to be sure before they give you the drugs because the treatment suppresses your immune system, so they want to wait to see if the demyelination in your brain is not just a one off attack, you should speak to the ms helpline there number is on google, they can give you good advice. Also try speak to your neurologist because if they think your Likly to go on and develop more ms lesions, they can offer you the diesease modifying treatment. Unfortunately you need to push and keep pushing, sometimes it takes years for people to get diagnosed because there’s just not enough evidence showing on the brain that gives them enough information to clearly diagnose and treat multiple sclerosis
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Also always remember a normal LP does not mean you DO NOT have MS.
My LP was also normal
Depending on how good or bad your doctors and neurologists are, it might be worth using a company called VISTA HEALTH, paying, and getting a mri of your brain done every 3 months to look for a change, unless summit Else happens to you which warrants the Nhs giving you a MRI. Vista health would just need a referall from your GP, think the mri is like £250. I guess it depends on how much fight you have in you to push the Nhs to get your answers . I wish you all the best.