Permanent Optic Nerve Damage

By msadvocatejess

2 min read

When I first started having vision problems, I was 27-years-old, two years into my diagnosis of MS. I started closing my right eye when I was driving because my vision was annoying and weird... strange shapes swirling around and missing pieces of the puzzle. It made me dizzy to look through my right eye.

My neurologist sent me in for five day IV's of Solumedrol Steroids every other month but it wouldn't stop the thinning of the Optic Nerve.

I really freaked out when the same thing started to happen in my left eye a year later.

My vision continued to decline in both eyes over two more years until I could no longer drive, recognize faces, watch TV, read sheet music, and the list goes on... and on... and on.

I am now 34 years-old and have been living with visual impairment for so long that it is MY LIFE. I talk about it all the time because it gets in the way of everything I do and I know it can't be fixed.

I've found the best way I can deal with it is by poking fun and making light at my frustration. My friends know if they are waving at me and I don't respond to yell out, "Hey, blind girl, over here", or something to that effect. I live with a good attitude about it because I know this impairment has brought me strength, knowing I can still live my life and forge onward.

I'm glad I don't meet others with MS often who have permanent Optic Nerve damage, though I know other visual problems are quite common. I do know that I could've been more proactive and urged my neurologist to switch my disease modifying therapy to something else when all of the damage was occurring. I stayed on the same medication for two years as I continued to get worse. I didn't know any better!

Since I can't go back and change the past, I can instead use my story to help others be persistent with their doctors and not allow Optic nerve damage take over their lives!

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dee4tim Member
I found your story very interesting. My other half has MS. He was diagnosed May, 2013. He has had vision problems for 6 years. His eye doctor diagnosed him with Optic Atrophy, his optic nerve is grey in color. They had no idea why...been to several eye specialists. This is the best way we have found to describe his condition of his sight: Degeneration of the Optic Nerve, which carries vision information from the eye to the brain. He has dimmed and blurred as well as reduced field of vision. Difficulty seeing contrast and fine detail. Example people's faces just like you. We didn't know he had MS till 6 years later.
1. msadvocatejess Member
 That sounds just like me! My neurologist at the time said it was Optic Neuritis but once I saw a Neuro Opthalmologist, he called it a thinned Optic Nerve. It is crazy how MS targets different parts of our body to eat away at!
Member
I've had MS for 12 years & up to now, I never had eye problems. But all that has changed since the end of June. I have 4 doctors on the case...lol...they all agree it's Optic Neuritis. When I saw you post, I felt it could have been written by me. I am going for an MRI (Tesla 3)of my brain & eyes. This machine is supposed to have higher magnetic fields than the ones in the hospitals here. I too us humor & a try to have a positive attitude. I am 62 & retired. I have a lot of support from family & friends. My husband is my rock. So, as you said, we can't go back. This is the hand we were dealt. I use my cane when I go out. I don't go out alone. But I do go out!!! Thanks for sharing your story. Hope you continue to have great days ahead.
Member
Can anyone help me with this problem...as I wrote on the 21st, I just started having problems (optic neuritis)& it seems to be getting worse by the day. It started in my right eye & then the left & now it's both eyes. I am going for the MRI I mentioned, but I need to know it anyone can tell me what to do about the pain. It wakes me up from a sound sleep. I want to pull my eyes out...I lost "spunk" to go on...I have been through a lot in 12 years, but this is something I can't seem to handle...I know I said I'm doing okay, but when it gets as bad as it is now, I just can't muster up the "smile". I have my second infusion (Tysabri) this Wednesday...anything info you can give me would be a plus...thanks, Linda
1. msadvocatejess Member
 I don't remember what I did about the eye pain... it was 7 years ago and the pain for me didn't last long. (I am also on Tysabri- I WISH I had started it when I was having my first signs of vision problems... I've had no new progression in three years though my Optic Nerves were already damaged) . I hope your doc can help you with the eye pain.
2. Member
 Thanks Jessica...I just put a call in to my Neurologist's MS Nurse...hopefully she can tell me if they can help me...I am having the 2 MRIs on Sat. morning. Stay well.
lyoder7 Member
I too lost the vision in my right eye, went through a five day course of IVSM, to no avail. It's a permanent loss. Six months later the same thing started with my other eye. That same day I started IVSM and it STILL didn't help. I was legally blind in both eyes and was told by two doctors - one a neurologist and one a neuro-opthalmologist, that this was permanent. It wasn't until I saw my MS specialist that I heard "don't lose hope just yet." That's when she put me in the hosp for 10 days to do five rounds of plasma-pheresis (PLEX). You know what? It WORKED! I can now see out of my right eye again - good enough to DRIVE. Now, I will say that losing vision in both eyes so suddenly and so severely, DID change my diagnosis to NMO - but regardless, anybody experiencing vision loss with no success with IVSM, needs to be requesting PLEX. What do you have to lose?
1. msadvocatejess Member
 well that is something new I've never heard of for vision loss. I will put in a call to my neurologist. He's an MS Specialist and so wonderful to me. He gets frustrated that he can't fix my eyes! I know of PLEX since I've been on Tysabri for so long but that is very intetesting. My vision had been gone for 7 years so it is unthinkable to me that anything could help. So grest to hear this from you!