dx'd Optic Neuritis now, 8 yrs after dr 1st suggested MS but didn't Dx

[JustJen]

Hi all, I first joined here in 2007 after my primary doctor told me he suspected MS. I probably have a ton of old posts in the archive, LOL. And like a lot of those, this will be long. I'm just like that I guess.

Anyway, back then I kept a health log of all the oddities going on because nobody could figure out what was up with me. (I still have it and was looking at it today in fact, so glad that I did that for 3 years during the worst of the craziness).

My body thermostat was crazy, tinglies and numbness issues, fatigue and weakness, right eye blurry one day when I woke and sore and tired and never did go back 100% to normal.. I had MRIs (without contrast, all clear), blood work for all the autoimmune stuff you can think of (twice, literally - all clear), an EMG (all normal), went to memory clinic, you name it, but despite the odd things that were going on I couldn't get a diagnosis or any answers from any of the specialists. Just my main doctor saying he suspected MS, but wasn't finding any evidence of it.

I played this game of testing and appointments from September of 2006 through late 2009 and then got fed up and decided to just force myself to re-focus and basically fire all the doctors but my primary.

I didn't have any real health issues until August, 2014 when I had my daughter at the eye doctor for a back to school checkup, and since the eye MD is my sister in law, she offered to check my eyes while I was there (probably because she asked how long til my last exam and I said never, and she knows I've had problems with pain and light sensitivity off and on most summers). Well, long story short, I was diagnosed with Primary Open-Angle Glaucoma at age 41 last summer. We're having a hard time keeping the pressure under control.

So, when I got a persistent pressure type of eye-ache Monday night I figured it was about time for my glaucoma drops, and it had been a long day, so I took a couple of Advil and put my drops in and went to bed. Woke Tuesday morning to find that the discomfort was still there, but now there's a weird, grey... smudge/smear/blur thing on my right eye right in the middle making it hard to see to read.

It's almost cool because it looks like someone used a ruler to make a perfectly straight line RIGHT across the center of my eye from left to right, but only the outer half (from pupil to outer eye), then used a sponge in grey paint to put a sponge-paint kind of smoosh on the lower outer quadrant of my eye. It's so perfectly straight that I jokingly told my husband it's like a bionic eye with a built-in sight, if I just aim at the inner most part of the straight line I can hit any target any time because I swear it is perfect center.

But yeah I told my sister in law and she said to call the eye dr and get in to be seen but I had to bring my daughter to a music festival that day, so I waited til Wednesday morning and called then. I called the glaucoma specialist who I always see. He was out of the office so I saw the Opthamologist, who did every test you can imagine including VFT, OCT, tested my pressures, dilated me, looked in my eyes every which way, used different lights and hand-held magnifyer things, checked my color vision, acuity of course.. you name it. Then said that I'm not having a stroke or event that requires me to go to the ER but I need to come back the next day at 5pm to see my regular doctor because I might need an MRI.

I went back at 5pm yesterday as scheduled and saw my regular doctor who examined my eyes again himself, this time not dilated, and said that he can see some changes to my optic nerve (remember I have regular tests done because of my glaucoma so he was able to compare several different tests across a period of time) and said it's mild optic neuritis. I told him I had previously suspected for MS but told that with testing unable to find anything, we had to just wait and see if anything else came up. I said "I even had the MRI and everything and it was normal" and he said "good! where was it done? We're going to need another one". So, I'm waiting for insurance to approve an MRI right now. I wont hear back until Monday at this point because it's after 5pm and is Friday.

I have not been given any medication for the optic neuritis. I am guessing that I will not be offered any at any point, because my glaucoma would contraindicate steroid treatment. It's a shame because when I was having so many odd issues between 2006-9 the only thing that ever helped were the few random trials with prednisone taper packs. But that will no longer be an option for me. Glaucoma is a leading cause of irreversible blindness and my pressures are already 30 and 32 at this time while on the drops, so I can't risk the pressure going higher.

I guess I'm posting because of a few reasons. I've never had ON before and wonder if it will get worse before it gets better.. I sort of expect that it will but am not sure. I wonder about the lack of steroid treatment and how it will affect me now and perhaps in the future if I end up with an MS diagnosis.

And I wonder if having optic neuritis now on top of the other oddities that went on (none of which could be diagnosed as anything else) would be enough for an MS diagnosis? Who knows perhaps I have lesions now, which I guess would cinch it anyway..?

Also I am into technology, and into how humans work, so of course imaging technology fascinates me.. and so I find myself wondering where they will be most likely to find a lesion considering my very specific visual defect. Right eye only, lower outer quadrant only, with that horizontal line perfectly separating the unaffected part with the affected part.

Well, I guess nobody will remember me and I probably won't recognize any names because like I said, I posted a lot in 2007 and maybe 2008 but got frustrated with a lack of diagnosis and felt like I didn't belong here without one, but I'm glad to be back anyway. If I gotta get optic neuritis, there's no other group I trust more than you all to ask about it.

[JustJen]

oh also he said that my right/affected eye has RAPD. I'm pretty sure that is why when I looked into my fog-free shower mirror Tuesday morning, my left eye was dilated but my right eye's pupil was bigger. I did a double take but didn't take a picture of it, but I should have, it was pretty cool looking!

[jreagan70]

I have not been given any medication for the optic neuritis. I am guessing that I will not be offered any at any point, because my glaucoma would contraindicate steroid treatment. It's a shame because when I was having so many odd issues between 2006-9 the only thing that ever helped were the few random trials with prednisone taper packs. But that will no longer be an option for me. Glaucoma is a leading cause of irreversible blindness and my pressures are already 30 and 32 at this time while on the drops, so I can't risk the pressure going higher.

I guess I'm posting because of a few reasons. I've never had ON before and wonder if it will get worse before it gets better.. I sort of expect that it will but am not sure. I wonder about the lack of steroid treatment and how it will affect me now and perhaps in the future if I end up with an MS diagnosis.

Your ON might get worse, it might not. As with most things MS, you'll just have to wait and see what happens.

And it's OK not to take steroids for ON. Fifteen years of the Optic Neuritis Treatment Trial (ONTT) showed that there's no difference in the final outcome between people who had high-dose steroids and people who weren't treated at all.

The only difference in the treated group of patients was time of recovery. Treated patients tended to recover faster, but the final outcome was the same as untreated patients.

The ONTT showed that most people with ON due to MS got most of their vision back afterward, whether treated or untreated. So the odds are good (not guaranteed) that you'll recover most of your vision. How long it takes is anybody's guess.

What will be interesting for you now is how your ophthalmologists will keep track of what part of your visual field loss in the future is from glaucoma and what part is from ON -- this episode or possibly another later. Visual field losses from glaucoma tend to show up the same way as your ON field loss -- with a perfect horizontal line across the middle, depending on where the glaucoma starts to do more damage.

And I wonder if having optic neuritis now on top of the other oddities that went on (none of which could be diagnosed as anything else) would be enough for an MS diagnosis? Who knows perhaps I have lesions now, which I guess would cinch it anyway..?

It will depend on what those other oddities were, and whether they can be identified as being consistent with an inflammatory, demyelinating event.

The diagnostic criteria for MS were revised in 2010 to simplify the process. The latest revision relies heavily on MRI findings. So if you do have lesions show up on your MRIs, your diagnostic process could be more streamlined than before.

You can read the McDonald criteria here http://onlinelibrary.wiley.com/doi/1...ana.22366/full and compare your own history and test results to see if you meet them.

[JustJen]

Your ON might get worse, it might not. As with most things MS, you'll just have to wait and see what happens.

And it's OK not to take steroids for ON. Fifteen years of the Optic Neuritis Treatment Trial (ONTT) showed that there's no difference in the final outcome between people who had high-dose steroids and people who weren't treated at all.

The only difference in the treated group of patients was time of recovery. Treated patients tended to recover faster, but the final outcome was the same as untreated patients.

The ONTT showed that most people with ON due to MS got most of their vision back afterward, whether treated or untreated. So the odds are good (not guaranteed) that you'll recover most of your vision. How long it takes is anybody's guess.

I guess I knew that would be the answer.. it can be hard to have to sit back and wait but it is what it is.

What will be interesting for you now is how your ophthalmologists will keep track of what part of your visual field loss in the future is from glaucoma and what part is from ON -- this episode or possibly another later. Visual field losses from glaucoma tend to show up the same way as your ON field loss -- with a perfect horizontal line across the middle, depending on where the glaucoma starts to do more damage.

That's a good and interesting point! But just to be clear, right now I have perfect visual field test results despite what is going on. The horizontal line I describe is the way my vision appears to me, personally. A description of my perception of the visual defect, might be a better way to say it.. ?

I have a re-check in ten days to review my MRI results (assuming I get the MRI before then, which depends on the insurance company and how long they take to approve it, yeesh) and I don't know if he'll do another one then, or order EVP testing or what. I wonder if I would need to see a different sort of eye doctor? He's a wonderful glaucoma specialist trained at Wills.. and his opthamologist was very thorough and seemed very experienced as well.

It will depend on what those other oddities were, and whether they can be identified as being consistent with an inflammatory, demyelinating event.

The diagnostic criteria for MS were revised in 2010 to simplify the process. The latest revision relies heavily on MRI findings. So if you do have lesions show up on your MRIs, your diagnostic process could be more streamlined than before.

You can read the McDonald criteria here http://onlinelibrary.wiley.com/doi/1...ana.22366/full and compare your own history and test results to see if you meet them.

I have been looking at the different criteria tables/charts quite a bit the past 24 hours or so and really I don't know how my doctor(s) characterized my past problems. For all I know they could've said they were all psychological or hypochondria or who knows what. After so many tests with so few answers I guess that's probably a common concern though.

Thank you very much for your thorough and thoughtful reply!