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

[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.