Weird eye symptoms? Help?

[DrDiana]

Thank you, cathyb,

I can't tell you how much this helps!

[newlywed4ever]

Dr Di - I can't say that I have weird eye problems but this may or may not be related. I have recently (2 visits) started seeing a chiro who specializes in functional neurology. We are working on my balance & drop foot issues and she tracks my baseline/improvements using my eyes tracking different objects/dots on paper, etc. Basically, my understanding is that we're retraining the brain to use different paths to regain function. Most of my exercises include doing different things with my eyes, i.e. spinning around on an office chair while holding a ruler with red dot on top at arm's length whereas I watch this red dot while spinning; counting red stripes on cloth that I'm draping and pulling over hand. There has been measurable improvement over the course of the last month.

I realize this isn't what you're researching but I thought you'd find it interesting.

[Johnson]

What are some weird eye or vision symptoms you have had?

Early in my course;

First symptom was colours looked weird over the course of a few hours. Blue looked purple, red looked orange, and so on. That was in the afternoon. By evening things started looking grey. By the next morning it was light perception only.

Vicious nystagmus on right lateral gaze, with beats in synchrony with my pulse on forward gaze. Oscillopsia, Diplopia. All of those symptoms seem always iminent.

Since, and now;

Slight diplopia

I get flashes of rectangular panels of neon purple grids in my field of vision - as if the hologram is breaking down. Often it starts at the left and goes up and to right. Up to about 30% of the field of vision.

In low light, I see a spinning disc 4-6 feet in front of me. It is a pale green light going to white, almost as one might expect a ghost to look. The disc varies in size from about 4 inches to eight iinches in diameter. Sometimes there will be a larger disc with a smaller one to the side. I photoshopped the effect one time. I will try to find the pic.

Light sensitivity.

"Bloated" eyes. Focusing is tiring.

[CD]

Hi Dr. Diana,
Just trying to help.

I had O.N. once in 2001 and again in 2005. I had morning headaches for years which are all gone since the CCSVI procedure,TG. I had head pressure, and pain in the back of the mid-head which is gone too.

Back to 2001: I got the ice pick pain driving to work in my right eye. I didn't have a clue what it was. Then while in work if I looked at something white or light colored paper, it had a big yellow spot on it the size of a 4 inch diameter circle. Everything in the circle was slightly blurry.

I went to the eye dr and was tested ASAP. He said it was ON with a central scotoma but vision was not bad so no steroids. It went away in 12 days, and came back about a week later and stayed for another week. Then it was gone. I had mild ice pick pain on and off during that bout.

Next, O.N. attack was in 2005. It gave me mild pain. The right eye saw pages in any book as yellow and old, like parchment paper. Then I had a bad relapse after, and could not walk. I just fell, no balance. I could barely wall walk two steps.
I had IVSM 1000 mg daily in the hospital for 10 days, as an out patient. I was in a W/C or scooter with this. Then I was okay again after about 6-8 weeks.

I was walking with cane for 6 years, but I don't need it anymore since I started LDN 3 years ago.

During my relapses from Heck, walking was bad, and my eyes had double vision, but it was up and down like ghost writing. I saw two as I read, one ghost line below every line I read. I could read both. I had halos on TV and street lights. Gone after relapses ended.

I am still sensitive to light. Florescent lighting hurts or makes me dizzy. Like the floor is dropping. I wear sunglasses in stores.

I had MS about 30 years now. Yet my CCSVI treatment has given me many improvements, even left over residual damages are gone. I have had so many relapses over the years I lost count.

I am mobile and doing well despite a list of 35 symptoms, most you can't see. CCSVI treatment took away about 3/4 of them. I am very thankful.
Sorry to write so much, but after so many years, I could write a book. But I never was good with spelling.

Oh, a few times while driving, while I was stopped at a light, if I looked out my car side window, I thought my car was moving and I stomped on the brake harder. I was not moving, it was just a feeling. Weird.
CD

[Robnl]

Dr D.,

Suppose you know this already, but there are oeople who had OCT or GDX scans before and after CCSVI treatment. The status of the eye-nerve improved.

I also had an OCT scan in Poland and a GDX afterwards. Because of the difference in OCT and GDX the eyedoc could not speak out loud but she thinks the eye nerve improved, that would be very special cause the yes nerve can not regenerate (well, until now

I've read that dr Simka will speak at the symposium, he thinks that the OCT scan is an important measurement

[Cece]

Dr. Simka's OCT abstract from ISNVD:
http://ccsvism.xoom.it/ISNVD/Abstract-S ... erence.pdf

My eye symptoms have included:
pain deep in the eye
flashes of light on sides of vision
dimming of all colors (is this an eye symptom or brain symptom?)
red seen brighter in left eye than in right eye
temporary blindness/going black
difficulty seeing something that is in front of a patterned surface (eg difficulty looking at a person standing in front of miniblinds)
difficulty with night driving because of headlights being "too bright"
differences in size of pupils

[DrDiana]

Hi Newlywedforever,
Cool! (although I would likely toss my cookies at the first spin...)

[DrDiana]

Thanks, Robnl,

I agree completely! At what used to be my office (prior to disability) and is now my husband's office, he makes sure everyone gets the OCT testing. We're hoping it's indicative of what may be happening in the brain, too, as the optic nerve is a direct extension of the brain. It is the only cranial nerve like that.
It has no myelin, which adds an interesting twist to the story, but if we can discern very early changes in the optic nerve (just as we would look for brain atrophy as early as possible), it can, at a minimum, help us monitor the results of treatment (we hope). And it is extremely accurate, easy to perform and non-invasive.

How great is THAT?! We still have some questions about what it is telling us, and the differences between the two hemispheres of the brain, etc., but what fun research!
Thank you for your input,

[DrDiana]

Hi Not Johnson,

Thank you!
Can I ask you, when you get those vivid color panels that move, do you ever get a headache after that? (mine are black and white. Somehow, I feel slighted now...)

and the "bloated eyes" -- do they just FEEL that way, or do your eyelids actually get puffy?

Thanks so much

[DrDiana]

Oh, Not Johnson,
I'm sorry, I forgot to ask...
Do you know if you have CCSVI (and were you treated?).

Thanks again,

[David1949]

Sometimes when I look at a series of horizontal lines, the lines seem to vibrate. I first noticed it when looking at a stack of CDs. It stops if I shut one eye or the other. I was dxed with MS 15 years ago. This issue started about 1 year ago. Its not a big problem yet. (Knock on wood)
I've never had MS related vision problems before but this could be one.

[DrDiana]

Thank you, Cece!

Can I ask you if the pain deep in your eye comes right before the color dimming/temporary blindness issue (it can be a sign of impending optic neuritis, but I'm trying to see if your eye pain is NOT related to optic neuritis).
Also, does the pain deep in the eye tend to develop in the same eye, or does it alternate?
Finally (almost!) when your pupils are different sizes, do you know which eye has the LARGER pupil? This is easiest to discern in fairly bright light. I'm wondering if it is the same eye as the one with pain.

Ok, now finally, do you know if you have CCSVI and have you been treated? I'm sorry if I should know the answer (brain fog, you know).

Thank you, as always, for all of your wonderful information!

[DrDiana]

Hi CD,

Thank you so much for your help.

Only 35 symptoms? You ARE doing well...

Can I ask you if you still have any feelings of your car moving when you look out your window? (after the CCSVI)

I'm so happy to hear that CCSVI has been a great benefit for you,

[Cece]

Thank you, Cece!

Can I ask you if the pain deep in your eye comes right before the color dimming/temporary blindness issue (it can be a sign of impending optic neuritis, but I'm trying to see if your eye pain is NOT related to optic neuritis).

The color dimming I was only aware of when everything brightened, post-CCSVI procedure. The temporary blindness happened only once. It was pre-diagnosis, cleared up in a matter of minutes, and never had an explanation. Neither of these were connected to the pain in the eye.

Also, does the pain deep in the eye tend to develop in the same eye, or does it alternate?

It's always been the right eye, which was also diagnosed with pars planitis.

Finally (almost!) when your pupils are different sizes, do you know which eye has the LARGER pupil? This is easiest to discern in fairly bright light. I'm wondering if it is the same eye as the one with pain.

It was over a decade ago that this was going on. I'm afraid I don't remember.

Ok, now finally, do you know if you have CCSVI and have you been treated? I'm sorry if I should know the answer (brain fog, you know).

Yes, I have CCSVI, and yes, I've been treated.

[EJC]

Hi EJC,
Thank you for your help. I'm so sad that she has regressed. It sounds like the docs are on the right track, though.

Crazy question, when she has double vision, do you know if it is side by side, up and down, or a combo of both?

Thank you so much!

Side by Side.