Last reply 3 years ago
Those with optic neuritis

Have the color in your vision ever and back? In 2006 I went totally blind in my right eye. Feb 2015 I started losing my vision in my left. Since Feb I’ve had 3 attacks and this third one really messed up the color. Everything is darker. I can’t see my food, or cook. When I’m at the grocery store or mall I can’t see. I can’t shop anymore.It’s like in a certain lighting I can’t see anything. My fiancé bought some bright light bubs for the house and I still can’t see. I’m curious if the lighting/color vision will ever be back to normal? This has been a rough 3 months. I’m still on steroids. That is the only thing keeping me from going permentally blind. I filed for ssd because I cannot care for myself or kids anymore. I had another mri yesterday. Doctors still don’t know what’s the cause of my optic neuritis. I can’t stop crying.

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3 years ago

Hi @jkfamily. I’m sorry that you are in this situation… big hugs. I first started with optic neuritis back in December in my left eye. One Tuesday morning I woke up with blurred vision and by Friday I could barely see. All colours were so dark and I couldn’t read. I was so scared u was going blind. The next day I went to the opticians, did tests and they sent me straight to the eye clinic. At first they thought it was a detached retina but as it was a Saturday, many doctors weren’t available. I went back the following Monday and had an eye scan where is determined that my optic nerve was very inflammed and there you have it: optic neuritis. I went every week at first to have fields and visionary tests where little improvement was shown. Eventually the nerve inflammation reduced over time but I still have lasting damage. Colours are much darker, I can’t read with it, especially afar so my right eye compensates, I often have to turn my head to read something so that the right eye can see it fully and driving can be a nuisance. I also have sharp pains at times or like something is rattling behind my eye. Although it’s a shame, I am glad in some ways as that led to my MS diagnosis. The eye doctor did say that as it can repair slowly over time but it’s not likely as it’s now been 6 months for me and no improvement since my last assessment. Who knows though? The body can do wonderful things. I really hope yours improves.

3 years ago

@jkfamily , I’m sorry you are having such a rough time of it.

Your current bout of ON came on at the same time as mine. I got the headaches in the last week of January 2015, then in Feb, the vision started to disappear, but mine is in my right eye – my dominant one.

My left eye is lazy & has had to pull its socks up, and it is trying its bestest. However, my vision changes from day to day, which can be quite disorientating. I lost all vision in the right (faded to white – which was well weird), but then, late March, I started seeing shapes again – but black and white. During the Spring I have had a lot of vision return (80% on a good day). It is saturated in the red, so my blues & yellows are OK, but not the reds, oranges & pinks.

With heat, exercise & on a sunny day, it ‘whites out’ again, but this is starting to reduce too.

My MS nurse tells me that it can take a year or more to settle down. It might not come back, and it might. Just one of those unpredictable MS things.

I hope the MRI results can answer some questions. It’s good to have a supportive fiance, too!

If you feel yourself going a bit mad and want to do something constructive (I know I did!), it might be an idea to start researching how to adapt to life with limited vision? It helped me.

I really hope it starts to return again, and life can return to a be a little more ‘normal’ for you. Hang in there, be patient (easier said than done, I know!), and let others help you.


3 years ago

How distressing for you all that suffer with ON. l am following the Biotin for Progressive MS – group on facebook. We are taking a high dose Biotin B7 – following the MedDay Trial. The outcome showed a good response for people with ON. As it is a B vit – and water-soluble it is safe to use in high amounts. We are taking 300mg a day of the pure pharma grade powder.

3 years ago

Hi @jkfamily, I had a similar problem but this was about 10 years before diagnoses I received a blow to the left side of my head, and lost all vision in my left eye for about 6 weeks, after which my vision came back to approx 80%. After having weeks of seeing eye specialists they couldn’t explain what was wrong. Last year when I was diagnosed I explained my optic problems to the neurologist and she thinks it may have been an early symptom. Although it is a real pain in the ass I’ve come to accept it and my right eye has compensated for it right to the point I spent the last eight years driving for a living. The moral is your eyes and brain are amazing things and will compensate for most problems. All the best

3 years ago

All of my mri’s and x Rays were normal. My neuro said I need to see a rhemotogist (sp)now. So frustrating

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