Optic Neuritis - very slow recovery

Hi all,

I have posted once before on here when everything started to kick off around 6 weeks ago. I was diagnosed with Optic Neuritis 6 weeks ago after my vision started to deteriorate over the course of a few days and ended up being completely white with no vision at all.

I was prescribed oral steroids which I took for 5 days and it did seem to improve things a little but since then they have plateaued, actually I would say worsened a little bit. My vision is like looking through a cloudy window and nothing is sharp and sometimes at its worse is a little blurry; however I can read most of the chart in the dr’s office which is obviously some improvement.

I can also ‘feel’ something on my eye - almost like a lens is always on my eye and I have headaches persistently.

I had an MRI of the orbits (and the radiologist said they would take one or two of my brain) and have a follow up with the ophthalmologist this Thursday.

I am very concerned about MS, they did mention it to me as a possibility but said it was likely too early to tell, but I am confused as to why they didn’t perform a full brain MRI to check for any signs? My other symptoms include:

head and neck aches
joint aches, knees and wrists
pins and needles in feet, arms and legs and a crawling sensation on my scalp and sometimes face
leg weakness - this has improved slightly but they just don’t feel as strong

I feel conflicted about my eye - I read that most of the healing is done within 5 weeks and it’s likely it wont heal any more after this time. However the doc said it could take longer - however, now that I can read the letters on the chart, will they assume the recovery has happened and this is residual damage? I have noticed that heat/exertion makes it worse and it gets worse as the day goes on.

I am so so afraid it will happen in my other eye and I will go blind / have much reduced vision.

It’s worth saying I suffer very badly from anxiety - particularly around my health so this is such a scary time for me.

Has anyone had a similar experience or can you offer any advice to help the healing process or just any words of support/reassurance or comfort?

Thank you,

Pippa x

Hi Pippa Optical Neuritis can take A YEAR to recover. Not sure about 5 weeks. It depends on how severe the attack was. ON is usually only one eye so hopefully you will be good. I have really good vision i.e. i can see the black letters with my glasses, but i can see colours properly anymore so have had some form of residual damage and a second VEP test confirmed my optical pathways brain to eye had slowed down even more i assume it is because of demylinating events i dont quite understand it lol but it got me my diagnosis as it back up other findings, i.e. MRI and LP. I would wait and see what the opthamologist comes up with on thursday. You seem to be in good hands. ON does not mean you have MS it can be a stand alone and other diseases can also present with ON. I know its easy to say but try and stress too much over this ok. big hugs pippa and good luck hunny. xxx

Hi crazy chick,

I actually replied on another thread, sorry about that! Thank you so so much for replying to me, it means so much.

I just really hope it gets better than this, as I say I can read the letters on the chart now but it still feels like I’m looking through a steamed up window and it’s so distressing. It’s reassuring to hear it could take a year. I’m so worried it will start In the other eye,

i know it’s silly to worry but I’m such an anxious person.

Thanks again xx

I understand why you would be anxious hun, but it should resolve itself but i was told up to a year, and its right, as the last attack took slightly under a year to resolve itself. I do know from experience the more you worry about it the worse it makes the symptoms, so try and keep calm over it and yes do not get over warm it would hit me like a ton of bricks if i was in a hot room.

It will get there, big hugs, i know your scared we all are. xxxxxx