Your eyes?

[Sidesteps]

I was reading some of Q's posts and holy cow something hit the mark for me. My eyes.

I have had some strafe stuff going on with my face and eyes since I got sick. I think I figured out I have cranial nerve involvement in addition to the optic neuritis (left eye.)

Ever since I got sick, I kept saying that my right eye seems to be heavy, sometimes sucken in and "wider". It even sometimes seems droopy or that I have a bags now and look "tired" far more. I have mentioned it several times to my doctor's but feel a bit disregarded. This last appt. I made them check for thyroid issues (negative) before my positive VEP.

Anyone else have experience with this as Q did? I am so excited that this may all be linked. I thought I might have multiple diseases. I am going to print it and bring it to my MS specialist.

Any advice? Anyone else have experience with this. Also - I looked at my CT scans and MRI this last weekend. I hadn't dove that before because they said there was nothing there but I could make out several bright spots that were really small. Low abd behold in my optic nerve area there is one.  It appears to be about 3mm in diameter. There are a few others about the same. I admit I'm reaching and I know my doctor will now do a followup MRI. They made mention of one artifact, if I recall correctly,  I'm wondering if they misread them as artifacts?

Anyway- anyone else take note of facial flattening or what I described? I would like to know I'm not losing my mind.

[Karen99]

When my initial symptoms of MS led me on a journey to a rheumatologist and other doctors, I looked like something the cat had dragged in.  During that year I looked older. That was 10 years ago.  That sudden aged look went away.  :-)

An ER doctor had noted that I "looked older than stated age."  Well!  My grandchildren are usually thought to be my children and on a good day people mistake my adult children as my siblings.  

When I developed double vision and other symptoms, an internist noticed that my eyelid sat above my pupil and thought I was having a thyroid problem.  It was negative.   Whatever was causing that gave me a wide-open-eyed-look.  Not surprising as I was having one symptom stacked upon another and was entirely miserable and run down.  

I noticed things that some doctors couldn't see.  At one point pre-diagnosis, one pupil was smaller than the other and both were slow to react to light.  I was in an active flair and strange stuff was happening.  

Have you had a cervical spine MRI too?  I would think you should have one.

Try to take really good care of yourself during this time.  

[COBOB]

ON can cause a Marcus-Gunn pupil.  My second MRI reported decreased caliber of my optic nerve and tract.  They did not see a lesion, but they did see damage that is associated with optic neuritis.

Bob

[SarahL2491]

when I get ON, one pupil will look slightly smaller than the other,

[jensequitur]

Ah, I see!  Optic neuritis will make your eyes feel weird, but it won't make the eyes appear different.  Like I said, I went through a time when the right side of my face sagged more than the left.  That was most likely a problem with my trigeminal nerve.

The 1.5T probably wouldn't have picked up optic nerve enhancement.  So what I would do is to research the MS facility there in Seattle, and see what kind of machine they're using.

Is that the Swedish research facility?  I'd give them a call and find out what they're using.  Their phone number is: 206-320-2200.  I can't find any info on their website.

[Sidesteps]

Jen,

I'm sorry. My post wasn't all that clear I don't think.

I have/had optic neuritis. I became sick last Fall and the neurologist (not a specialist) I saw diagnosed me with Optic Neuritis, Internuclear Ophthalmoplegia and positive Rhombergs among many other issues he noted. I came to this board with concerns and opted to make an appt. with an MS specialist for a second opinion. I had that appt. in early February and he ordered several more tests and a VEP. The VEP came back positive. I had all the symptoms of optic neuritis - haze, pain, sensitivity to everything. I started noticing the double vision about 6 weeks ago though... and couple black area's of vision loss and large area of "dimming of colors" in my visual field.

Since I was sick, I have had pretty significant residual issues with my eyes. My left eye has the ON. My right eye is the one with the strange sensations and appearance to it. I have pictures of before the illness and after and there is a clear difference. I don't have "bags under my eyes" but I look sick. Different. The surrounding tissue around the eye when I was at my worst seemed numb and swollen. My eye looks wide.

I also get the twitching, numbness and sometimes brief stabbing pains on my face. The twitching and jerk is all over my body though too... nothing new there, that was my very first symtpom that just progressed.

My neurologist said that if I tested positive for ON. He will start me on a follow-up of MRI's every six months. I'm due for another in June. He might opt to do the spinal tap. I don't know. I haven't spoken to him since I was told by the technician I had optic neuritis.

My first MRI was 1.5T. I'm assuming that this specialist has a better MRI as this is at our MS research facility here in Seattle. I'm in a high risk area with lots of cases. Hopefully they know what they are doing. I hope. My last Neurologist clearly didn't.

[jensequitur]

You've heard all the advice about not looking at your MRIs.  Well, the same applies here.  It's very difficult to find obvious stuff on the MRI, let alone an enhancement of the optic nerve.  If they said that they found nothing, then they probably found nothing.

I learned a lot about MRIs by looking at this page.  

http://www.radiologyassistant.nl/en/4556dea65db62

It shows typical MS lesions and compares them to MRI findings from other diseases.  It will help you understand what lesion activity looks like.

The optic nerve has nothing to do with the muscles of the face.  It has everything to do with your vision, however - if you have white spots, black spots or flaring colored spots in your eyes, that indicates damage to the optic nerve.  I have damage both to the optic nerve and to the retinal nerve fiber layer.

I certainly don't want to rain on your parade.  I personally had changes to my face as a result of muscle weakness.  My mouth on the right side sagged, as well as the right eyelid.  The weakness didn't cause bagginess, however.  I had other facial symptoms which made me think something was going on, like tingling, numbness, and twitching.

So your neurologist is doing a followup MRI?  I'm guessing the first one wasn't to his standards?  I tell everybody to get a 3T MRI if you suspect MS.  I would recommend that, since the first MRI didn't show anything useful.  Good luck!