Does this sound like ON to you?

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FLNatalie
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Does this sound like ON to you?

Post by FLNatalie » Mon Apr 07, 2014 4:20 pm

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Old 04-07-2014, 08:04 PM
FLNatalie FLNatalie is online now
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Does this sound like on to you?
Hi all,

I am still undiagnosed, and thus is my first post here, but my question is vision-related.

My visual symptoms are what made me consider the possibility that the paresthesia I was experiencing might not be "nothing."

What I have experienced is very hard to describe, and doesn't sound like the typical description of ON. The best way I can describe it is to say I see too much light. Light from a window that should stay in the background doesn't; it actually looks like it is in front of things closer to me than they are. Florescent lighting is bad this way, too. I see long beams of light from concentrated light sources like light bulbs, day or night. My left eye is definitely worse than the right, and sometimes this difference causes a double-vision like experience for days or weeks at a time.

I have been seen by an opthalmologist, who said my eyes looked healthy, no damage to the optic nerve that she could see. She really didn't know what might be causing it, but wants me back for a visual field test.

Do any of you recognize these types of symptoms? I obviously do have other, non-visual symptoms that made my doctor suspect MS, but the thing with my eyes is driving me crazy!

I'd appreciate any comments or advice.

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jimmylegs
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Re: Does this sound like ON to you?

Post by jimmylegs » Mon Apr 07, 2014 4:38 pm

is it anything like 'scintillating scotoma'? i've had something like that before..

http://en.wikipedia.org/wiki/Scintillating_scotoma
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

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jerrygallow
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Re: Does this sound like ON to you?

Post by jerrygallow » Mon Apr 07, 2014 5:07 pm

yes. On has been my biggest and most troubling symptom. I had an episode in my right eye, an episode in my left eye, then again in both eyes. What you describe sounds very much like my second attack. My first one came out of nowhere and onset quickly. However, the second, started with flashes in the corner. Then at night, I would see the bars of light like I was looking through a dirty windshield. Lights would also have halos. Then the colors change. And everything looks washed out like the contrast is too high. Too much light is a good way to put it. Unfortunately for me, within a few weeks I was legally blind and did not regain the better part of my eye sight. So, I'm not trying to scare you. But I would caution you to not wait like I did. Doctors took a wait and see, and "everybody gets their vision back anyway" approach with me. If I could go back, I would change my diet quickly (I've since followed the Swank diet for many years with good success), and I would mega dose vitamin D along with blood thinning supplements like bromelain, vit E. I have also eliminated dairy to good success. Bed rest is a great option too as Dr. Swank found. In other words, take it seriously and take care of yourself. Don't wait on the doctors

And I went the ophtamologist route too. I had neuro opthos, second and third opinions. They all told me my eyes were beautiful, healthy, etc. They can't see the optic nerve. That's behind your eye. That's where the damage occurs with MS. Now once the nerve dies, as mine has, then they tell me that the optic disc is discolored. What good does that do me now? They sent me running around to retina specialists, doing useless field tests. I needed to see a neurologist. When I had my field test the guy, a supposed expert, told me it was a brain tumor. I should have just gone to the ER and had an MRI done. Even when my doc finally sent me to the MS clinic, it was 6 months to get an appointment. When I mentioned that it could be an emergency that I was losing my eyesight, they said, "well you said it has been happening for a while, so what's the rush". I have little faith in docs now

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jimmylegs
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Re: Does this sound like ON to you?

Post by jimmylegs » Mon Apr 07, 2014 5:30 pm

somehow my neuro was able to tell me that my optic nerve was in great shape.

what an unhealthy optic nerve looks like through the ophthalmoscope:
"Primary optic [neuropathy] is caused by a process that involves the optic nerve. It may be caused by multiple sclerosis, nutritional/ toxic optic neuropathy, pituitary tumor, optic nerve tumor, traumatic optic neuropathy, or it may be inherited. ... optic nerve fibers degenerate in an orderly manner and are replaced by columns of glial cells without alteration in the architecture of the optic nerve head. The disc is chalky white and sharply demarcated, and the retinal vessels are normal. Lamina cribrosa is well defined. See figure below."
Image

but i've still seen weird visual symptoms before. according to the esteemed wikipedia, scintillating scotoma has nothing to do with the eye and lots to do with the brain. maybe eyedoc will check in on this one :)
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

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bartman
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Re: Does this sound like ON to you?

Post by bartman » Mon Apr 07, 2014 6:07 pm

what you are describing is exactly what my cousin was describing when he was very ill. It turns out that what he had was called neuroretinitis which is very very similar and closely related to optic neuritis. From there we discovered he was misdignosed with MS for 13 years and had 5 infections (chlamydia pn, mycoplasma pn, babesia, bartonella and lyme) the most serious was called bartonella which is very difficult to treat but is treated with minocycline or doxycycline and rifampin and or zithromax. Please ask your doctor to treat you for bartonella as it has been misdiagnosed for MS but is treated with the same medicine used for MS. Minocycline. Testing for these infections is unreliable as these infections are difficult to detect. Then remember it takes 6 weeks for you to strt seeing improvement and since the infection is very difficult to eradicate you may need to treat multiple times. I am not a dr. but speaking from experience do reserch on bartonella, neuroretinitis and it will lead you to the treatment you need...fyi my cousin was really sick but his eyes were the first thing to get better and he knew right away that minocycline was working on his eyes.

FLNatalie
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Re: Does this sound like ON to you?

Post by FLNatalie » Mon Apr 07, 2014 6:15 pm

I appreciate all the responses!

I don't think it's the scintillating scotoma because it doesn't move at all in any of the shapes mentioned in the article.

Batman - I don't think it's Neuroretinitis either. I don't see wavy lines where they should be straight.

Okay, now, jerrygallow, you do have me scared! I have already had an MRI and am awaiting results next Monday. If my condition is the same as yours, should an MRI show it?

Thanks again.

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jimmylegs
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Re: Does this sound like ON to you?

Post by jimmylegs » Mon Apr 07, 2014 6:29 pm

here's someone else's attempt to show it, on youtube.

the video looks different than what i've seen. my eye thing was more like the two animated gifs at the bottom of the set of pics on the wiki entry.
this one is funky

they don't show what happens to it when you look at a bright light though.
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

FLNatalie
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Re: Does this sound like ON to you?

Post by FLNatalie » Mon Apr 07, 2014 6:57 pm

That second YouTube video looks like the ocular migraines I've gotten in the past. It grows and obscures the vision in one area but without the rainbow arc. This condition I've had for two months now is not that either.

I appreciate all the input. Having something to look into keeps me hoping I'll eventually find out what it is!

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shinyredsparkles
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Re: Does this sound like ON to you?

Post by shinyredsparkles » Tue Apr 08, 2014 3:30 am

Hey FLNatalie! I've had optic neuritis in my right eye three times now... for me, it made everything dark. Colours especially - I could look at a bright red object and see the colour fine with my "good" eye, and then with my affected eye it would look more browny/red. I also had a lot of pain when I looked upwards and struggled with depth perception (I walked into lots of stuff much to the amusement of my friends and family! :))

Sometimes though when I've had migraines I experienced more of what you described with the super bright lights. Whatever it is, good luck and I hope you find some answers soon! :)

FLNatalie
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Re: Does this sound like ON to you?

Post by FLNatalie » Tue Apr 08, 2014 3:15 pm

Hi shinyredsparkles,

What you have sounds like all the standard descriptions of ON I've ever seen. Mine sounds so different that I was wondering if what I have could be ON, or if it's something else the doctors are missing.

It was very frustrating to sit there and have the optho say she didn't know what was wrong with my vision because everything she could check was perfect, including my glasses prescription.

Thanks for answering.

Natalie

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