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ageicul · 05-16-2012, 11:38 AM

I was diagnosed with Optic neuritis 13 weeks ago.
Sunday before Valentine’s day I woke up having sandy, blurry vision in my left eye - 3 days later I went completely blind. Pain? Cannot even describe it - Excruciating...for about 1 week.
Since then...3 eye doctors, 1 neuro doctor = 2 brain MRIs+1 cervical MRI+1 thoracic MRI + 1 Lumbar tab...all Clean. Still no explanation for my ON. Does not seem to be MS, no infection, no other symptoms. I feel just fine. I did not even had a cold this spring.
The ON affected the optic chiasm, so, to make the matter worse 1 mo. after the onset, my right eye started to behave funny. This was when I've got 3 days of Solu-Medrol infusions…
I could not drive, but I had to go to work. My husband was my chauffeur all this time. I could not stand the light and I was dizzy, could not even walk straight.
It took ~ 2 weeks for right eye to get back to normal. However, the left one is still in the dark. It's been 13 weeks and I can see only some shapes and detect movement, but no light or details. My last eye doctor is not very optimistic. He does not think that is going to get better than this!!!! My neuro doctor said to wait and see??? I am going crazy here. My eyes are my life...my work depends on my vision.
I feel like is no hope for me. I cannot live like this!
I am scared to go to sleep...what if the other eye goes bad again?!
Every morning I wake up, I open my eyes slowly hoping that this nightmare is over! And it is not...imagine how I feel. Then I have to go through the day like I am a normal person when deep inside I just want to disappear.
Am I ever going to see again?????

MSJayhawk · 05-16-2012, 12:14 PM

Welcome.

sorry to hear of your vision loss. ON can be part of MS or it can be a stand-alone disease. I have two acquaintances in Japan who have ON only. One of them lost her sight and is legally blind (she can see but very little). The other lost all sight in her right eye. Both are sensitive to light.

It is really difficult to know to what degree you may or may not recover your sight. My ON did not show up until 20 years after my diagnosis, but each time I lost vision, I recovered it. My right eye is quite sensitive to light and I have worn a pair of polarized sunglasses since 2002. Interestingly my night vision is really good in the light sensitive eye.

As your neuro said, you have to wait and see. If long term is expected, you may want to train yourself to not depend on your bad eye. When I lost the use of my right arm, I trained myself to use my left arm. At night I close my good eye and rely on my "bad" eye to navigate in the house. During the daytime I have had to learn to do things without depth perception. Each adversity we encounter can be overcome.

I hope you get well soon!

ageicul · 05-16-2012, 12:19 PM

Thanks...I am a very independent person, I like to do things for others not the other way around...It's hard not knowing and my patience is running out.

MSJayhawk · 05-16-2012, 12:23 PM

Patience is always in short supply!

You might have to delegate some things in order to allow yourself time to remain independent. I will keep you in my prayers.

adnilin · 06-06-2012, 11:10 PM

Has your vision improved at all since your post? I hope so. I've had ON for about 4 weeks now no improvement at all.

ageicul · 06-07-2012, 05:10 AM

It's been 16 weeks exactly... I still cannot see. Maybe, maybe the shades are a little brighter, maybe...it's hard to say. Somedays is better, somedays is worse.
I do not understand what is happening to me?! And is nothing I can do about it! That's the most frustrating thing. It depends how tired I am OR the heat, yeah, the heat makes it worse. I love working in the yard. Well, I still do, but afterwards, my eye hurts like crazy and the "vision" (if you can call it that!) is completely dark. I am trying to minimize my outside work...You know what the WORST part is? Some people think that I am faking it! I was told "Come on?! Is nothing wrong with you! You are the perfect picture of health!" What do you answer to that? I wish I could crawl under a rock and stay there forever!Or somebody should shoot me and put me out of my misery!...

MSJayhawk · 06-07-2012, 06:59 AM

It may take more time to recover. My right eye has been in pain sine 2002 and the only relief for me has been my sunglasses and when it is worse, a patch. ON heals differently for each person. The neuro-ophthalmologist is in the best position to tell you what is going on with your optic nerves. It could very well be new lesions in the same area.

Yes, all of your life you will meet people who assume that you are faking your disability. This is an unfortunate part of an MSers life. I wear sunglasses all of the time and walk with a cane. Some people believe I am blind and some think I am faking blindness. People will often seek out the worst conclusions. I have learned that I have but this one life God has given me. Inconsiderate people are just obstacles we have to walk past.

I am keeping you in my prayers.

ageicul · 06-07-2012, 07:21 AM

I no not have MS...all my MRIs and spinal tap are clear...
My neuro doctor does not know why this happened to me. She said that now all we can do is " wait and see!"

Keep in mind that I am still functional ...
I am driving (with one eye!), I am going to work and actually do the work. I have not miss a day yet.
So, it's hard for people to understand, actually they cannot comprehend it, that I still can be me even with only one eye.
I keep telling them : Don't ask God to put on your shoulders as much as you can carry...You'll see then!

I try to be strong but when I am by myself I break down and cry...

MSJayhawk · 06-07-2012, 07:41 AM

You may not have MS, but you could have nerve damage. I have a friend in Japan who has ON and is affected in her left eye.

If you have not seen a neuro-ophthalmologist, I would highly recommend you make an appointment. Vision is one gift that we have that is not recognized by most until it is impaired. I can certainly understand your emotional turmoil. Each time I lose my sight I often wonder if that which I see is the last I will see. I think you will feel better when you can get some answers.

Please know that you are not alone. When you need to vent or share, feel free to do so here. There are many who can empathize with what you are feeling. I will still lift you up in prayer. And when you need to cry, let it out. Your pain is certainly recognized by many of us here.

ageicul · 06-07-2012, 08:01 AM

Yes, I did see 2 eye doctors + 1 neuro-opthalmologist + 1 neurologist whos speciality is MS...
I have another appointment with my neuro-ophtalmologist in 1 mo. He is puzzled too. I've seen him 4 times since this issue started.
My lady neurologist (neuro doctor!) want me to do another MRI in Oct.
So, they are still looking.
I agree that might be nerve damage...Is no way of knowing yet.
Whatever God want to do with me...it's out of my hands!

MSJayhawk · 06-07-2012, 08:39 AM

I would say you are doing everything right. It is certainly in God's hands. Stay strong. It will take the patience of Job to get through this situation, but I believe you can do it!!

adnilin · 06-07-2012, 01:57 PM

Thanks for the response. I've had ON for 30 days now about 15 days ago it peaked so I basically can't see anything out of one eye. My MRI and blood work also came back clear. I am also working and driving. I feel your frustration. Doctors also told me to wait and see and to rest a lot. Waiting is the hard part.

ageicul · 06-07-2012, 02:03 PM

I know what you mean....I'm right there with you, in the same boat!

KingBaxter · 06-07-2012, 07:11 PM

Hi, I had ON that started on 5/4/2011. The healing/vision improvement was very, very slow. I did get put in the hospital 5 days after it first started and put on IVSM. I noticed improvement the very next day after first treatment. It has been much slower since then.

I have read that after a year you shouldnt expect it to improve any further, but i feel my vision has gotten even better in the last couple of weeks and it's almost back to 100%. My vision has always been 20/20 even when my ON started and i was hospitalized. For me it was more the color vision and blurriness.

I understand how you feel, i was completely devastated when this happened. I was also told that i have possible ms. Luckily i havent had any other issue than this ON. I used to get really upset when i thought my vision would not improve, but my brother just kep telling me that it takes so long for a nerve to heal. Whether that's true or not idk, but it made me feel better.

I hope your vision will improve and that you can start feeling better.

adnilin · 06-07-2012, 09:51 PM

Well thats good to tea, slow is better than never! Its been a rough last couple of weeks. I even had to leave work today I was so upset after my doctors visit. Im and educator and as everyone is planning there summer vacations I'm praying this doesn't go over to my other eye.

adnilin · 06-07-2012, 09:56 PM

Thats awful to hear people think your faking it. Well who cares what other people think, I've learned to only care about what my family think of me. This ON problem has defintly given me a new perspective on life. And although its terrible to be blind in one eye I also realize that it could be a lot worse. Good and bad days but mostly good. Keeping everyone in my prayers to get better!

wildhorse64 · 06-07-2012, 10:31 PM

Quote:

Originally Posted by KingBaxter

Hi, I had ON that started on 5/4/2011. The healing/vision improvement was very, very slow. I did get put in the hospital 5 days after it first started and put on IVSM. I noticed improvement the very next day after first treatment. It has been much slower since then.

I have read that after a year you shouldnt expect it to improve any further, but i feel my vision has gotten even better in the last couple of weeks and it's almost back to 100%. My vision has always been 20/20 even when my ON started and i was hospitalized. For me it was more the color vision and blurriness.

ON has taught me not to rely on feeling but on vision tests. After perimetry test I went to see ophthalmologist again, thinking vision is still in the same state, but when we did the tests, I could hardly read anything and could hardly see anything on Ishihara tables. Few days ago it was much better yet I didn't notice the change. Therefore from time to time I do the FM100 Hue test online and write down the score. Right now left eye gets score about 83, right eye 4. Used to be much worse, first time I did the test it was 275 for left eye. I don't test long range/short range reading, as that was measured to be almost 100% back after IV solumedrol treatment.

ageicul · 10-07-2012, 12:39 PM

It's been almost 8 mo. into my optic neuritis...No improvement...Am I going to live like this for the rest of my life? My life better be short because I cannot handle it anymore. I'm so sick of pretending, smiling, living like is nothing wrong with me, joking about it....I just want to scream for GOD to hear me, because He is not!!!!!!!!!!!!!!!!!Can somebody make Him hear my pain????????

MSJayhawk · 10-07-2012, 01:28 PM

I am sorry you are experiencing this problem. After so many months it is a burden and frustrating. You do not need to pretend for anyone. I learned this long ago. If I am having a bad day, I am having a bad day regardless of what is going on around me.

It is difficult to know when you will be able to recover or if you will be able to recover, but I am keeping you in my prayers.

According to some, the apostle Paul’s eyesight was permanently damaged when he was blinded on the Damascus Road. God told Paul that he would have to live with the infirmity so that he would maintain his humbleness. I have been dealing with issues for 35 years and I would love to be fully healed, but I am not. We inhabit corruptible bodies which are prone to sickness and eventually death. I count my daily blessings and have found a rich life even with my infirmity.

I would encourage you to stop pretending and start living your life the best you can. If you count your blessings, you will find that you are indeed blessed even with your infirmity. A Rabbi once said that the first blessing to count is the moment you awaken into another day and then to count the blessing you get with your first breath, and continue to count throughout the day.

Vision loss/impairment is not easy, believe me. I have had light sensitivity issues with my right eye since 2002. I have also plunged into total darkness. It is difficult, but I do know that pretending is a stressful burden. I would encourage you to stop pretending, find something good to focus on, and start living your life one day at a time. Though it might be difficult at this moment, there are better days ahead. I know, I have been where you are and I experience daily trials too, but I also enjoy many wonderful blessings.

You are still in my prayers.

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