Optic Neuritis and MRIs

[silkything]

Hi, I'm new here and scared. I'm waiting for tests/results of tests or am a medical mystery! I have been diagnosed with ON after some very strange symptoms: peripheral vision loss, focal point loss, eye pain, balance problems, vomiting, and I can hear my eyeball move and see loud bangs. Symptoms are coming on one by one.I also have arm pain/weakness.
I had a CT scan and MRI scan when I got admitted into hospital, and the Dr came back and said that they were clear of lesions or structural problems. But then I got referred to an opthalmologist and he's not happy with the MRI and wants a dye contrast MRI amongst other tests. He was the one who diagnosed ON. If the MRI came back clear first time, could it still be MS does anyone know, or are they looking for something different? (I know no-one KNOWS the answer to this, but has this happened to anyone else?) MS has been suggested by his registrar. Can scleroses be invisible to a normal MRI test?
Thank you...x

[silkything]

Hi Nancy,

Thank you so much for that; it was a really interesting, and thought provoking, form. I realised there were other things that have happened too. Like when I walk "golden spider's webs" flash across my left eye with every footstep, and other things.
Your synesthesia sounds interesting. I've come across "seeing music" before, although I hadn't associated my seeing loud sounds as that. But spacial awareness of numbers is something I can't conceive. To me a number "happens" as a knowledge in my head. Or as an image on a piece of paper.

I've got a contrast MRI on Wed, so starts the beginnings of investigations.
Hope you're having a good weekend xxx

[Nancy T]

I just looked at Eagleman's synesthesia battery (test) and indeed he does ask whether certain sounds have certain colors for you.

http://synesthete.org/pretest.php?action=register&remail=&semail=&ch=

[Nancy T]

That is really bizarre. Re seeing different colors with different noises, there is something called synesthesia in which people see letters and/or numbers as having certain colors, or else they associate other sensory things which normally have no association. I have not heard of noises being associated with colors, but it sounds like the same kind of thing.

Synesthetes have these associations all their lives. (For example, I have number-form synesthesia, in which I see numbers, centuries, days of the week, etc. as having a particular, fixed spatial orientation in relation to my body. Until reading about synesthesia a few years ago, I thought that everyone saw (for example) the 20th century as starting directly to their left and kind of downward, and that everyone saw the teens on a numberline leading straight up/forward and turning left 90 degrees at 20, then a kind of dropoff between 29 and 30, etc. Because that's how the numbers ARE, that's how they objectively exist in space--so I thought--and I can't conceive of them any other way.)

However, the fact that your sound/color associations came on recently suggests some kind of brain damage. The doctors are missing something in  your case. The "cross-talk" between different brain regions (sound and color)  suggests something is wrong, since you weren't born with it like synesthetes are.

There is a neuroscientist named David Eagleman who has a done a lot of research on synesthesia.

If I were you, I would keep after the doctors about this and try to find a neurologist who is actually interested in figuring out your mystery. Good luck!

[sllowe]

Silkything,

You sure do sound like you have a thorough optho there. Doesn't sound like you need proof of ON to me - Your opthamologist dx'd it, and now wants to see things a bit further. Wasn't happy with how the MRI was ordered. Let him look deeper - it's a good thing.  

Are you seeing improvement with your eyes? -Shell

[COBOB]

MRI contrast is not really a "dye" and doesn't help a doctor see anything that can not be detected without the contrast (in the case of demyelinating lesions.)  Issues with a optic nerves are a bit tricky.  

A normal MRI of the brain at some imaging centers will not detect issues with the eyes or optic nerves.  Most of the time, a doctor has to order an MRI of the "Eyes, orbits and optic nerves" or specify "Rule Out Optic Neuritis."  The slices have to be smaller and it clues the reading radiologist to concentrate on these structures.  

MRI and VEP are considered the best ways to "prove" optic neuritis with clinical testing.  In the case of the VEP, "a well maintained waveform with increased latency" (more than 115 mS for people under 60) is considered abnormal.

Bob

[Sidesteps]

I think that is called phosphene's - the lights that flash with sound or movement.

Welcome to the forum. I had a lot of the ON symptoms but my tests have come back negative for it in many ways. There is a mild reduction in amplitude which could indicate something is going on. I see an Neuro-Ophth hopefully in the coming month to shed some light.

Hang in there. It can take some time to recover.

Again, welcome to the forum.

[silkything]

Hi

Thank you for the warm welcome :-) This seems to be a really friendly forum. Thanks also for the comments. I've had a look at some of the pages attached to this forum and they do answer a lot of my questions. I do seem to have a very good opthalmologist. When I saw him (first time) last week he started from the beginning again, rather than relying on notes bought forward from the emergency clinics. I've had this for 12 weeks so far. No-one's mentioned any treatments though. I'm so exhausted all the time with it though.

Thank you for the advice on asking for an MS specialist. I will ask about it at my next appointment.

Nancy: I have a kind of humming in my left ear (the ON is on the left eye) and when I look in different directions the humming (which has a kind of throb in it) changes pitch and the throbbing speeds up. It's loudest and quickest when someone shines a light in my eye. As an analogy, it's kind of like Luke Skywalker's light saber in Star Wars.

As for seeing sounds, it's only loud, sudden sounds. If there's a crash or a pop or something I get an explosion of coloured light. Different sounds have different colours. Eg, dropping saucepans is royal blue, with a bright white light around the edge. A slamming door is red with a bright white light  around the edge.

[Nancy T]

Could you describe what you mean by you can hear your eyeballs move and you can see loud bangs?

[Wobbly]

Hi there, I just wanted to welcome you to the forum and hope you get an appt to check this out.  

take care and let us know how thing go and how you are feeling
wobbly

[anon07072023]

First off, welcome to the forum, I don't think I remember seeing you post on here before. You have some good questions.

Since your opthalmologist is wanting a dye contrast MRI, that tells me right away that the MRI they did in the hospital was not done using MS protocol. If it wasn't done using MS protocol, lesions can be missed.  Even if it was done using MS protocol, lesions related to the eye and ON are very hard to see.  Yes, this could be MS or it could be something else.

If you don't have an appt set-up already, you really should try to find your way to a neurologist that specializes in MS. This doctor can run other tests to rule out other things that can mimic MS.

Take care,
Kelly

[Guitar_grrrl]

Hi, and welcome!

It sounds like you have an ophthalmologist who's on the ball.

Check out our Health Pages (link on right side of this page).  There's some interesting stuff on MRI, as well as heaps of other info on diagnosing MS.  I'll tell you up front - it's not an easy diagnosis to make.

Keep us posted.  I hope your ON resolves soon.  Have your doctors mentioned treatment?

See you around,
Cheers,
Lisa