7/2014 UPDATE...HELP!!! Optic Nerve Inflammation?

[2012DisneyWorldBride]

About 3 weeks ago I had a weird eye symptom happen to me. I woke up in the middle of the night to go to the bathroom and my vision in my left eye only got funny and splotchy and gray (like when you rub your eyes for a minute and let go), I freaked out a little but my vision came back and I fell back to sleep, then the next morning my vision was very blurry and I had eye pain when I moved my eye, and that night when I took my contacts out and wiped off my mascara it hurt to touch my eye, but the pain was really deep in the socket feeling. Well fast forward 3 weeks and I am still having the pain when I move my left eye, a terrible headache that is right behind my eye (not like any other headache that I have had before), and my vision although not blurry seem like I have a smudge that I cannot get rid of.

I went to the eye doctor today, I had already had the appointment booked before this issue, so its a good thing! When they got to test my vision with my contacts, glasses, and without them, my left eye was so blurry that I couldn’t read the largest letter that they had... but my right was fine. I told the doctor about my symptoms and he did some tests with the bright light, looking at the nerve, and also testing the brightness of the color red. Something I had not realized that the brightness of the color red was not a vivid until now. He also took me into a room that I had never been to before at the eye doctor where he had me look at this target thing and a red line passed by a few times.

Then he explained that all my symptoms and some of the test results seem to point to Optic nerve inflammation... WHAT?!?!?!?!? Oh my! And that he wants me to go see a ophthalmologist neurologist as soon as I can, to do more tests and discuss if they want to follow it or treat it. So... I’m scheduled June 24th (earliest appointment that the Dr had available that I could go to that I wasn’t working).

So... my question is... has anyone dealt with this? What was the cause? I have looked it up of course, and it seems that it is called Optic Neuritis. Seems that Optic Neuritis is the beginning symptoms of a lot of scary diseases... including MS, which my grandmother died of when I was little. I’m just wondering if anyone experienced this, and what this new doctor is going to do.

Thanks for any help!
Michelle

 

[Maryr1]

First, I am very sorry that you are going through this. I know it is frightening and nerve wracking. Now, take a deep breath in and exhale nice and slow. Optic neuritis is often associated with diseases like MS. It is important that you go to your appointment with the specialist. They will likely do a few more tests. They often decide to treat this with steroids. No matter what, remember that these diseases have very different outcomes today than they did 10, 15 years ago. There are lots of new drug therapies that are being used to treat MS. Stop reading the internet until you have seen the doctor. I know that is hard to do, but really it will help. One day at a time. Good luck and I will keep you in my prayers.

 

[indygirl99]

I've had Optic neuritis 4 different times. First when I was 25 last when I was 32. Now 50.

Each time they started with the "Probably MS" speel.

I do not have MS. Take a deep breath and keep off the internet if it is driving you crazy. Sending good thoughts your way.

 

[RitaZ.]

to you. I hope it's nothing serious. Give us an update after your appointment. Hang in there.

 

[nephthys43]

I had this happen too. Woke up one morning and my eye felt like I stuck a knife through it. My doctor told me it was pink eye but I was smart enough to get a second opinion and found out I needed to see a specialist.

The specialist went through the list of things that could cause it but I didn't have any history of it. A few months ago I got diagnosed with a specific condition that may have actually caused it. But for a little while there I was nervous about what coulda been causing it. My specialist gave me the list which not only included MS, but also syphilis and other crazy things.

 

[2012DisneyWorldBride]

Thank you all for you comments! I know I'm trying not to read the Internet because I know that will make my waiting worse.

I'm just getting tired of the eye pain and the terrible weird headache behind that eye. Ill just be happy if that goes away.

 

[wiigirl]

 

[Sunnywho]

I have had optic neuritis (blurring, pain, and different shades of red seen by the left eye than by the right eye). I haven't had it in awhile. If you have a family history of MS, I would expect they'll investigate that, which can mean an MRI to look for lesions, as well as a neurological exam. You get your foot scraped to check for reflexes, your hand buzzed to see if you can feel vibration, you get asked to walk across the room. I hope that this isn't what this is but if it is, know that there are more options now than there used to be for MS. My neuroopthalmologist does an OCT every other year, which doesn't hurt other than being bright; it gives a picture of the optic nerve to compare to normal optic nerves. OCT might be what you had done, when you say there was a red light that went by a few times? There's also a field vision test, with little spots flashing on the left or right and a button to click if you see a spot. But if your neurologist doesn't order an OCT or an MRI, then you might want to ask for those.

 

[2012DisneyWorldBride]

I have had optic neuritis (blurring, pain, and different shades of red seen by the left eye than by the right eye). I haven't had it in awhile. If you have a family history of MS, I would expect they'll investigate that, which can mean an MRI to look for lesions, as well as a neurological exam. You get your foot scraped to check for reflexes, your hand buzzed to see if you can feel vibration, you get asked to walk across the room. I hope that this isn't what this is but if it is, know that there are more options now than there used to be for MS. My neuroopthalmologist does an OCT every other year, which doesn't hurt other than being bright; it gives a picture of the optic nerve to compare to normal optic nerves. OCT might be what you had done, when you say there was a red light that went by a few times? There's also a field vision test, with little spots flashing on the left or right and a button to click if you see a spot. But if your neurologist doesn't order an OCT or an MRI, then you might want to ask for those.

They said I would be at the neuro ophthalmologist for 4 hours for testing.

Yes I think I had the OCT test done at my regular eye doctor appointment... I did see the print out of the reports but of course didn't know what I was looking at. I did the field vision test too... I think I did okay with that but did let my eye doctor know that it hurt my eye a lot to do that test... It was the moving part.

He also did a pupil test which he said my left eye wasn't responding like my right.

 

[scbelleatheart]

First, . Be very glad they caught it in time. No MS here but the medical advice/care you are getting is good.
I had the same thing 5 years ago and the first DR thought it was just broken blood vessels inside my eye and suggested waiting until it dissolved or whatever. 3 months later, still the same so he sent me to the primo DR in this field. He was so angry they let it wait that long. I had surgery to see if he could take the pressure off the optic nerve (he invented and teaches the process all over the country). The surgery relieved the pain and he was able to save my eye but not my eyesight in that eye.
Lesson learned so be glad your DR is on top of it and it did not have the chance to progress to far.

 

[carrie1626]

I've had Optic neuritis 4 different times. First when I was 25 last when I was 32. Now 50.

Each time they started with the "Probably MS" speel.

I do not have MS. Take a deep breath and keep off the internet if it is driving you crazy. Sending good thoughts your way.

I too had Optic Neuritis and went thru the "speel" but it must be done to know for sure, and like above poster, I do not have MS.


I hope your outcome is the same

 

[2012DisneyWorldBride]

Oh we'll that's positive!!! I'm glad that not every one that gets optic neuritis gets ms.

 

[kimblebee]

I will be the other side of the coin. I had optic neuritis in 1998 and was diagnosed with MS a few months later. I am actually dealing with it again right now and it is worse that it was the first time, more like what you are describing.

If it does turn out you have MS, your life is not over. Yes, it isn't something you want to hear but there are many different types of MS. Mine was the least severe kind and I could go 3 years in between attacks (relapses). Unfortunately, in my case, things are now changing. I have a lesion on my optic nerve so the damage to my vision may be permanent. Theres no way to know, which is frustrating, but that's the nature of the beast.

I am going to be doing all the tests you are in the beginning of July to see how much I actually can do with my left eye. I have full vision but everything is foggy and dull. If I try to read with only the left eye, the words get blurred out and I can't see them. I don't even know if I will be able to see the biggest letters on the eye chart with that eye.

I didn't tell you this to freak you out, I promise. I just wanted to mostly let you know that if you are diagnosed with MS, there is a lot of support and therapies available. Please PM me if you have any questions at all. I am very open and don't mind answering anything.

Please keep us updated.

 

[2012DisneyWorldBride]

Thank you so much... I probably will take you up on the PM thing when I have more questions and after my tests. It's nice to know there are support groups too.

Was optic neuritis your first symptom of ms?

 

[kimblebee]

Yes it was. I lost total vision in my left eye and they did a CT scan and diagnosed it as an infection in the muscle of my eye. I was given steroids and it did clear up the infection in a week or so. It was so long ago that I can't really remember.

They can't diagnose MS with just one symptom. If something else happens, they will send you to a neurologist for further testing and possible diagnosis. My second relapse was total numbness from head to toe on my right side. It happened 4-5 months after my eye issue cleared up.

Hopefully they can fix up your eye for you and you never have an issue again.

 

[scbelleatheart]

Do not think the worst. You have to be positive. I was never even told MS was a possiblity. I was so happy they saved my eye even if I cannot see out of it.
Forget MS for now. I focused on keeping my eye and never on MS (as I said I said, I do not have it). But with both, you can adjust. DF has MS diagnosed 30 years ago. She raised 4 boys and has good days and bad days but she is still alive, going strong. BTW, I am 54, still drive with eyesight in on eye. This has not really had an effect on my life.
It was caught early. You have statistics in your favor!

 

[2012DisneyWorldBride]

Thank you!! I'm trying to be positive...


Did anyone have issues with that eyelid drooping a little?

 

[2012DisneyWorldBride]

Well I ended up moving my appointment up due to the annoying pain. And of course then 3 days before my apt the pain started subsiding, but I got extreme dizziness and loss of balance.

The Neuto-optomolgist says It is optic neuritis and they are sending me for an MRI on Monday. They are going to look at the optic nerve and also for lesions. He says he's not sure if its MS but I do fit the criteria and some of my symptoms are now pointing to that. He did prescribe me meclazine for my dizziness that is helping and making me able to do stuff. The one night my dizziness before the medication was so bad I was laying on the couch and the room was spinning. Not fun! He decided to not treat the optic neuritis and just watch it... Which I'm glad because I didn't want the high doses of steroids.

So we will see what happens Monday and then with my follow up a week later. Just wanted to give you all a update

 

[sbtrfly74]

The MRI will help determine if its MS or not. Like Kimblebee (sp?) I also was diagnosed with MS but do not have any lesions on my optic nerves only in the brain.

I get the fuzzy grey in my eye off and on, but with no pain or any other symptoms. It just comes and goes.

Hope everything goes well.

 

[RitaZ.]

Sending you more good thoughts. I hope all goes well on Monday.