It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-16-2012, 11:38 AM   #1
Newbie
(female)
 
Join Date: May 2012
Location: USA
Posts: 9
ageicul HB User
Unhappy Optic Neuritis - Am I ever going to see again?

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?????

 
Sponsors Lightbulb
   
Old 05-16-2012, 12:14 PM   #2
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,394
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Optic Neuritis - Am I ever going to see again?

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!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 05-16-2012, 12:19 PM   #3
Newbie
(female)
 
Join Date: May 2012
Location: USA
Posts: 9
ageicul HB User
Re: Optic Neuritis - Am I ever going to see again?

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.

 
Old 05-16-2012, 12:23 PM   #4
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,394
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Optic Neuritis - Am I ever going to see again?

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.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 06-06-2012, 11:10 PM   #5
Newbie
(female)
 
Join Date: Jun 2012
Location: CA
Posts: 4
adnilin HB User
Re: Optic Neuritis - Am I ever going to see again?

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.

 
The following user gives a hug of support to adnilin:
ageicul (06-07-2012)
Old 06-07-2012, 05:10 AM   #6
Newbie
(female)
 
Join Date: May 2012
Location: USA
Posts: 9
ageicul HB User
Re: Optic Neuritis - Am I ever going to see again?

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!...

 
Old 06-07-2012, 06:59 AM   #7
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,394
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Optic Neuritis - Am I ever going to see again?

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.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
The Following User Says Thank You to MSJayhawk For This Useful Post:
ageicul (06-07-2012)
Old 06-07-2012, 07:21 AM   #8
Newbie
(female)
 
Join Date: May 2012
Location: USA
Posts: 9
ageicul HB User
Re: Optic Neuritis - Am I ever going to see again?

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...

 
Old 06-07-2012, 07:41 AM   #9
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,394
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Optic Neuritis - Am I ever going to see again?

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.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 06-07-2012, 08:01 AM   #10
Newbie
(female)
 
Join Date: May 2012
Location: USA
Posts: 9
ageicul HB User
Re: Optic Neuritis - Am I ever going to see again?

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!

 
Old 06-07-2012, 08:39 AM   #11
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,394
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Optic Neuritis - Am I ever going to see again?

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!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
The Following User Says Thank You to MSJayhawk For This Useful Post:
ageicul (06-07-2012)
Old 06-07-2012, 01:57 PM   #12
Newbie
(female)
 
Join Date: Jun 2012
Location: CA
Posts: 4
adnilin HB User
Re: Optic Neuritis - Am I ever going to see again?

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.

 
Old 06-07-2012, 02:03 PM   #13
Newbie
(female)
 
Join Date: May 2012
Location: USA
Posts: 9
ageicul HB User
Re: Optic Neuritis - Am I ever going to see again?

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

 
Old 06-07-2012, 07:11 PM   #14
Senior Member
(female)
 
Join Date: May 2011
Location: NY, NY
Posts: 142
KingBaxter HB UserKingBaxter HB UserKingBaxter HB UserKingBaxter HB User
Re: Optic Neuritis - Am I ever going to see again?

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.

Last edited by KingBaxter; 06-07-2012 at 07:14 PM.

 
The Following 2 Users Say Thank You to KingBaxter For This Useful Post:
adnilin (06-07-2012), ageicul (06-08-2012)
Old 06-07-2012, 09:51 PM   #15
Newbie
(female)
 
Join Date: Jun 2012
Location: CA
Posts: 4
adnilin HB User
Re: Optic Neuritis - Am I ever going to see again?

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.

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (992), MSNik (521), Snoopy61 (58), J-one (13), Whimpurr (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), LasVegasgirl (8)

Site Wide Totals

teteri66 (1164), MSJayhawk (997), Apollo123 (896), Titchou (832), janewhite1 (823), Gabriel (757), ladybud (745), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 02:22 AM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!