optic neuritis question

[mikeysmom1995]

Hello everbody!
I went to my opthamologist for a long overdo eye appointment who proceeded to tell me that I did not have optic neuritis. Needless to say I was a bit shocked as this was part of my dx.How I was diagnosed was I woke up one day with double vision, eye pain, and my whole right side was numb and I had tingling in the right side of my face.

Went to GP and after office exam she immediately sent me for brain MRI. The MRI showed  old and new enhancing lesions both in my brain and enhancing lesions on both right and left optic nerve. The radiologist said they were demyelinating lesions consistent with MS.

Then referred to neurologist who did exam and ordered cervical spine MRI which also showed a lesion. Back to neurologist after 3 day course of solumedrol who confirmed my MS diagnosis.
THE neurologist asked if I had ever experienced any of these symptoms of numbness or tingling or eye issues. When I was 18 I had my first symptoms of whole right side numbness and tingling. My GP thought I could of had a stroke so I went for a brain scan where they injected dye and watch it go thru my brain. The test came back negative for stroke and said I was showing signs of exhaustion due to my college and work schedule (fatigue). I slept for days after that and my symptoms resolved.
Fast forward MANY years and odd symptoms here and there. BAck issues, Right foot numbness, bowel issues,bladder issues,heat intolerance.
Prior to my dx I had been doctoring with my opthamologist be cause I would wake up and one of my eyes would be red on the outside. Not itchy or draining just sore and lots of pressure. He never did figure it out but the only thing that would help it was steroid eye drops.
So my opthamologist is saying my neurologist was wrong to make an optic neuritis dx as my symptoms were not consistent with the dx.  I told him I met the criteria for MS dx and he said that he doesn't even know what that is but he was sure I didn't have optic neuritis.
What do you guys think? I'm not even sure what to do now!!!!!!
Thanks for reading my long post.
Best Regards, barb

[Tsearcy]

At the time of my optic neuritis, my opthamologist was not very bright. He actually had no idea what to do and never said I had it. My next door neighbor was an neurologist who I went and talked to. He had me fast track into hospital and started IV steroids within 2 hours. Eye doc never acted concerned, so I changed to another dr. in office. She is wonderful and acknowledges that it was and the scaring it has left now in my eye. So I don't know why, but they are not all informed on this topic. Should be, but search for a good quality opthamologist. They should see what was left behind - dr's who look into my eyes (with their light) all say something about it.

[mikeysmom1995]

Hi Barb,
I'm glad that your vision issue is better. For me the numbness and tingling  I could deal with, not pleasant, more annoying. But having your vision distorted was probably the worst thing ever and scared the baJesus out of me. I think because it affects everything you do and I was so worried it was going to stay permanently.
I still have some blurry issues and pain  but not on a regular basis.
Thanks so much for your concern and well wishes.
Darn spell check on my last post.
I meant HUGS back at you!!!!!!!
Warm regards, barb

[bbassel]

Hey barb hope things are better for you and know I am thinking of you!

I have no more black/darkness in the affected eye. I see normal colours and shapes now :)things get blurry in that eye, I can't see well in dim light, and can't see too far in the distance. I can deal with that as long as there is no blackness I am good.

The opthamologist wrote me a script for steroids which my MS specialist said wasn't nearly high enough.

I chose to opt out of steroids because I had relapses in the past that took my walking abilities etc. So I only want to take them for something more serious. I read somewhere that the more you are on steroids the less effective they are.

It is very scary when things happen to our vision. The whole experience made me realize that life can always be worse than we have it. Hope you are well,

Barb

[mikeysmom1995]

Oh Barb,
That sounds horrible to wake up to total black in one eye. I'm glad the hospital was proactive and had you see an opthamologist. Did they treat you with solumedrol?
So is your vision at 50% meaning you still have some darkness?
I'm sorry you had to go through this.
I feel so blessed to have all of you wonderful people here on this site.
Thanks bunches!!!!
HUGS right back at us!!! Barb

[bbassel]

I am glad you received so many informative replies! Everyone is so awesome :)

My ON came about when I was just finishing my first year after diagnosis. It was my fourth relapse in that year, and my last so far.

I Woke up one morning and it was black in my right eye. I couldn't see shapes, colours, nothing. I saw my docc who sent me to a hospital out of town where the on-call opthamoologist was.

Had a series of tests and an examination by the opthamoologist who diagnosed it as On due to my MS.

Basically over six months some vision returned slowly but my eye is very damaged and I think my vision has returned about 50 percent or so.

It was very scary and very depressing but I am so glad that I have some vision out of that eye and the world is no longer black.

Thinking of you and big hugs,
Barb

[mikeysmom1995]

Thank you for your reply.
I did have the solumedrol and things did resolve quickly with regards to my vision. I believe I will be seeing a new doctor as I don't have the time or money to deal with a doctor that doesn't seem to be very ms educated.  I don't feel like he did a very thorough exam either.
I have a neuro opthamologist that I am going to see and hopefully  things will work out better with him.
I'm glad there was no residual damage to your eyes.
Thanks again for your reply.
Regards, barb

[doublevision1]

Hi Barb, I had a bout of ON in 2008, a year after my MS dx. Blurred vision in left eye and pain like an ice pick in my eyeball which rapidly became intolerable. Within 12 hours of onset I was at the ER in the middle of the night. I was dx'ed with ON and given morphine for the pain, then started on a course of IVSM. I can't recall if it was 3 days or 5. Pain resolved quickly and vision returned to normal within a week or so as I recall. Later, my ophthalmologist, neurologist and neuro-ophthalmologist examined and tested me and could see no residual damage. My optic nerve looks fine. None of them interpreted this as a misdiagnosis. They all concurred there can be 100% recovery of ON, especially earlier in the diseas as I was at the time. Their opinion was that the sooner IVSM is administered, the greater the chance of full recovery. The research to support this isn't compelling, but they have all witnessed this anecdotally.  They all agreed as do I that I am lucky.

[mikeysmom1995]

Thanks Jens!
That was very informative and I will be switching to my mom and sisters Neuro opthamologist and ask about this test.
For years I had issues with mainly my right eye. I would wake up and the outer white area would be totally red. No drainage or itching, but very sore, irritated, and light sensitive. My gp sent me to my current opthamologist which could never get to the bottom of it. I commented on this last visit that all of that was probably due to my MS and he dismissed it as a thyroid issue.
I'm sorry for all you have gone through. It sounds like you have good doctors looking after you.
I appreciate all of the very helpful info, Jens
Best regards, barb

[jensequitur]

Found it! I've bumped it, but here it is:

http://www.medhelp.org/posts/Multiple-Sclerosis/Optical-Coherence-Tomography--MS/show/1477559

[jensequitur]

There's a layer of nerve right in the eye that has no myelin - it's an excellent way to see how much damage MS has done to your system, without the masking effect of myelin to get in the way. My neurologist over at UTSW had it done, along with a test to measure my field of vision.

The MRI didn't show inflammation on my optic nerve, but with the optic neuritis and the nerve damage to my eye, the neurologist said it's there - we just can't see it.

I've probably had MS for years - it seems like I was always getting my right eye 'scratched' and having to take a day off work because I couldn't open it, it hurt so bad. It was even sensitive to light. It looks like that was actually optic neuritis and I didn't realize it.

I posted about it years ago - I'll see if I can find the post and bump it up for you.

[mikeysmom1995]

Thank you for your reply.
No I have never had that particular test, but it sounds like a very thorough test. Did an eye doctor do the test?
I haven't had too many tests with my eyes. Did you have lesions on your optic nerves?  What caused the damage to your optic nerve? Do you have pain with your eye?
I hope you don't mind all the questions. I am very curious.
Best regards, barb

[jensequitur]

Hey, have you ever had an OCT? (optical coherence tomography?) It's really cool. It'll show you the thickness of your optic nerve in your eye. Mine's pretty ragged - it's apparently thinner in my left eye, to the point where there's holes.

[mikeysmom1995]

Thanks Imm,
you are definitely right that there are no generalizations with MS. I am not going to be too rattled now after hearing from you and the rest of the group. I appreciate your perspective. :)
Corrie,
Wow I can't imagine having blocks of my vision missing like that for any length of time. I understand your fear of it returning as it sounds awful.
I too get panicky when my eyes are starting again.
Thank you for sharing.
Karen,
You betchya I'm dumping him. My mom and sister both see a neuro opthamologist that they love. I have met him when I've taken them to their appointment and he agreed to see me but I didn't think I was to the point of needing him. I think now I need him.
I do believe my Neuro won't take his letter very well. She is a firecracker and I wish I could be there to hear that conversation. He indeed was very unprofessional all the way around and I don't have to deal with it.
Thank you for your response and for giving me the motivation to change.
Best Regards, barb
Hi Dennis,
Thanks for your response. It seems I'm not the only one who has dealt with this problem. I'm glad you were able to get your doc on the same page.
Enjoy it up there in Maine. I bet the colors and weather is glorious right now.
Best Regards, barb

[Sailorsong]

I can understand very well why you would be upset with your eye doctor. I was kind of in the same boat when I first started seeing my current eye doctor. (ophthalmologist). When I first started seeing her see did note some palling of my optic nerves but see kept insisting that it was from the high eye pressure in my eyes (not quite at the level of glaucoma). But once I did get my MS diagnosis, see then did concede that it was probably ON that caused it. It also probably helped that my eye pressure returned to nearly normal without any treatment over time.

Dennis

[Artanis12]

Sounds like it's time to dump your ophthalmologist.  My tolerance these days for doctors who refuse to listen to their patients and who have MDiety Complex, is about thiiiiiiiis thick.  His ignorance of, and off-hand dismissal of the MS diagnostic criteria, and of MRI methods for seeing damage to the optic nerve that can't be seen by cruder methods, does not inspire confidence.  It is also unprofessional in the extreme for him to be contradicting and essentially badmouthing your neuro to your face, rather than taking up a difference of medical opinion with that doctor behind the scenes.  He's clearly being led around by his ego, rather than motivation of providing excellent care for his patients. I would hope your neuro slaps him back HARD for his pompous letter.

I would suggest a neuro-ophthalmologist, if you can find one, and your insurance will allow you to change.  The premier MS doc in my city, is a neuro-ophthalmologist, so I know they can be pretty stellar MS specialists. At the very least, one of those would probably be less likely to blow off a neurologist's dx.

Karen

[Corriel]

Don't mind sharing at all. I had what was called Quadrantanopia. It is essentially like one big blind spot. In my case the left eye was the worst with the left quadrant 1/4 to 1/2 of my vision gone. The right eye had 1/4 of the lower left gone.

Essentially when I looked at something with both eyes I saw nothing on the left side until it the mid point of my left eye and then nothing on the right side of my nose until mid point of my right eye it was fine.

I would look at a digital clock that said 10:11 and I only saw 0 11. It was horrid and my neuro says caused by a big lesion in my left parietal lobe (almost at the occipital). I have been told it was a classic vision loss for stroke which was my original DX.

Lasted a few months, came back then I got the MS DX and it flared up every evening for the first year. Seems good now and only the left eye has a tiny bit of loss still. I worry a bit about it returning because although the lesion is not bigger after 3 years it is no smaller either.

[immisceo]

Just another perspective, I've had ophthalmologists and neurologists have to rely on MRIs and photographs taken by machines because they could not see my optic nerve via ophthalmoscope. So, it's not always easy to visualise with just typical exam equipment.

I have photos taken of my eye at my normal annual vision exam (as part of glaucoma screening), and they can always tell I've had ON in my past, even though my vision has returned to baseline and that was years ago. However, I wouldn't read too much into this. MS has a special way of being immune to generalisations!

[mikeysmom1995]

Thank you Leanne!
So your eye doc saw the inflammation and paleness only on the pictures he took? That is very interesting.  I too still have eye pain and blurred Vision, but it is not constant. I have added it to my list of new normal as well.
I appreciate the info you have passed along.
Be well and HUGS, barb

[mikeysmom1995]

Hi Corrie,
Thank you for your reply. I'm not sure why he didn't do the visual field test when I was first diagnosed.  
He typed a letter to my Neuro while I was sitting there telling her I didn't have ON. I'm sure she won't be happy with him either as he is pretty much telling her she is wrong.
I am guessing the lesions healed well with the steroids or he just didn't know what he was looking for. He rushed through my exam and I was so flabbergasted by what he said.
Corrie, if you don't mind me asking, what we're your vision symptoms from your brain lesion?
Thank you again for your information. I feel if I had been better versed in this MS maze I probably could have been able to defend myself and my dx.
HUGS, barb

[firerescue9]

   I have ongoing issues with ON.  I have blurred vision and pain in my right eye most of the time.  I had a MRI check up done for my MS couple days before my eye doctor appointment that showed the inflammation was back in my eye.  But when I went to my eye appointment the doc said that everything looked good.  He was aware that the MRI showed new inflammation.  When I was initially dx with the ON (by my eye doctor) they actually took pictures of my eye which showed the inflammation and the pale color.  But they had to take the pictures in order to see it.  Not sure if he saw it by looking at it.  I did not ask, I was in shock I guess as they kept telling me that this is a sign of MS.  This was in September 2014.

The new MRI's were 2 month ago and I still have pain and blurred vision and have also gone through another 3 day cycle of Soluderol IV. Which has helped some.  I am just dealing with what is left.  

I don't let it get me down, I just added it to the list of things that is my new normal.

Hope you have a better appointment when you get your tests done.

Hang in there!!

Leanne

[Corriel]

Hi Barb, I am so sorry that your ophthalmologist is such a jerk. There is nothing worse than questioning the diagnosis that you've been living with.

I have not had ON but have read that in some cases the optic nerve heals completely and everything the others have mentioned seems in line with that.

It isn't a bad idea to have a visual field baseline so I am glad you are getting that done.

My presenting MS symptom was a bilateral visual field loss with nothing wrong with the optic nerve, just big, bad, brain lesion. Your baseline will be helpful down the road if there is ever a vision issue regardless of whether or not it is optic nerve related.

Corrie

[mikeysmom1995]

Thanks so much joiedecour, and JJ for your reply.
  My Opthamologist is a bit pompous, and hard to talk to when he has a strong opinion, actually to the point where he will talk over you and not here a word you say.
I am going in for a visual field test at his office next week for a baseline. I think after that I will find a new eye guy.
Thank you for putting my mind at ease. I feel so lucky to have all of you on this site.
HUGS, barb

[supermum_ms]

Hi Barb,

I don't think you should be concerned what the ophthalmologist said means you don't have MS or anything, apart from this ophthalmologist seeming to be a little lacking information wise about MS, you actually have MRI evidence of the optic nerve under attack, consistent with demyelination and your objective diagnostic evidence is just 'less likely' to be what's getting the dx incorrect here.  

"In a typical first-time, acute case of ON, the general physical examination is normal. Pupillary light reaction is decreased in the affected eye and a relative afferent pupillary defect (RAPD) or Marcus Gunn pupil commonly is found. In bilateral cases, the RAPD may not be apparent.

Measurement of visual acuity reveals varying degrees of reduction in vision, from a mildly decreased visual acuity to complete visual loss. However, visual acuity may be normal, with only a limited, mild visual-field defect. Almost all patients with decreased visual acuity also have abnormal contrast sensitivity and color vision, as revealed by examination using a Pelli-Robson chart and Ishihara color plates, respectively.

Classic dictum states that a central scotoma most commonly is seen in ON. However, the Optic Neuritis Treatment Trial (ONTT) suggested that altitudinal field defects, arcuate defects, and nasal steps were more common than central scotomas and cecocentral scotomas. Visual field examination typically shows a central scotoma. Peripheral extension of the scotoma in any direction, and even a generalized depression of the entire visual field, may be encountered.

In acute ON, the fundus appears normal because two thirds of cases of ON are retrobulbar. With time, the optic nerve may become pale."

http://emedicine.medscape.com/article/1217083-clinical#b3

"The diagnosis of optic neuritis is clinical, based on the history and physical findings. However, MRI of the brain and orbits with gadolinium contrast has become the cornerstone of the evaluation in patients with optic neuritis. And MRI not only helps confirm the clinical diagnosis, but it also more importantly offers very strong prognostic information about the risk of future demyelinating events and MS......MRI of the orbits with gadolinium contrast shows enhancement of the affected optic nerve in approximately 95% of cases of optic neuritis, whereas optic nerve enhancement rarely occurs in nonarteritic anterior ischemic optic neuropathy."

http://www.ccjm.org/index.php?id=107937&tx_ttnews[tt_news]=361873&cHash=fad7a0fb4fc7a576c5d66aca6f340584

As far as i'm aware it's not outside the realms of probability for your optic nerve to look perfectly normal and the EVP to pick up the subtle but typical evidence of ON, so before you accept this opinion keep in mind that the VEP may show something and you still have MRI evidence that is no small thing...

Cheers........JJ

[Joiedecour]

This is weird. Can you ask for an OCT if you haven't had one? This shows small amounts of damage, even damage to nerve with subclinical optic neuritis. Here's what I'm wondering...if you had solumedrol when you had ON perhaps it prevented permament damage? I know that if the nerve and disc are pale, then this is atrophy and permanent. I have that, but I didn't know I had ON until too late because clinical signs were mild. If there is damage it will not go away and so nerve will always look pale, BUT if you had inflammation and steroids to calm it, then I would think that there is a good chance that the damage is slight and would only be picked up by VEPs or OCTs. Especially if you have not had recurrent optic neuritis.