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Stroke of the Optic Nerve

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Unread 02-24-2012, 12:33 PM   #1
Strhuntrss
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Default Stroke of the Optic Nerve

Has anyone had a stroke of their optic nerve? My symptoms all started with floaters, vision loss and being diagnosed with optic neuritis. Periphrial loss in the right eye, hit and miss words and blurry vision prevent me from reading for very long. Left eye compensates but notice it is getting tired more often.
First opthlamologist did nothing and gave me the wait and see if it gets better. two weeks later eye got worse. Did all kinds of blood work. Nothing.

Seeked out a 2nd opinion opthamologist(was trained at the Cleveland Clinic). took one look and said I should have had IV steriods when it first happened. He then gave me oral steriods to get the swelling down, pupils were not reacting the way they should have, floaters and pain behind eye balls and when moved up and down. Swelling went down but sx never went away.
Went back to see first opthamologist, he ordered an MRI that could not be performed because of braces on teeth mared the test, what they could see was nothing( didn't get to the contrast cancelled test before they gave that to me). visual tests every month still wait as see.

A year later, decided to stay with the 2nd opthamologist. Seems to care about my eye and not as big of a practice. He performed numerous blood work, numerous visual tests again, another MRI (this time with contrast) looking for lesions to rule out possible MS because of sx i now am having that mimic MS. Some things have showed up.

Now I'm not so sure that they are going down the right path. I know medicine is not an exact science and Dr's don't know everything. But they can at least make us feel like we are not crazy. I am about to give up. Eye sight is not getting any better, the last MRI pretty much ruled out MS. Now I am back to square one.

In looking at the MRI report and looking up the medical jargon they use, I found that maybe my problem is that I had a stroke of the optic nerve.
Does anyone else have this condition? Looking for answers in hopefully the right place. Seeing the 2nd opinion opthamologist on Monday to discuss the results and where we go from here

Last edited by Strhuntrss; 02-24-2012 at 12:38 PM. Reason: Miss spelled word
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Unread 11-10-2012, 08:26 AM   #2
rbrehany
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Default Me too

I recently had a stroke of the optic nerve. My visual symptoms are practically identical to yours. Same eye, same quadrant visual lost... My retina specialist says that it will likely never get better but could get worse. Apparently once the optic nerve is damaged nothing short of advancements in stem cell research give us a chance to gain the vision back.

My doc said there have been cases where people have recovered but it's not likely to expect to recover.

I'm finding this sudden new change very difficult to adjust to. Emotionally, I try to be normal around others however I can feel that something is very wrong when trying to see. Doing what I do professionally has become a struggle... I don't know what the future holds but I'm scared for my inability to take care of my family...









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Originally Posted by Strhuntrss View Post
Has anyone had a stroke of their optic nerve? My symptoms all started with floaters, vision loss and being diagnosed with optic neuritis. Periphrial loss in the right eye, hit and miss words and blurry vision prevent me from reading for very long. Left eye compensates but notice it is getting tired more often.
First opthlamologist did nothing and gave me the wait and see if it gets better. two weeks later eye got worse. Did all kinds of blood work. Nothing.

Seeked out a 2nd opinion opthamologist(was trained at the Cleveland Clinic). took one look and said I should have had IV steriods when it first happened. He then gave me oral steriods to get the swelling down, pupils were not reacting the way they should have, floaters and pain behind eye balls and when moved up and down. Swelling went down but sx never went away.
Went back to see first opthamologist, he ordered an MRI that could not be performed because of braces on teeth mared the test, what they could see was nothing( didn't get to the contrast cancelled test before they gave that to me). visual tests every month still wait as see.

A year later, decided to stay with the 2nd opthamologist. Seems to care about my eye and not as big of a practice. He performed numerous blood work, numerous visual tests again, another MRI (this time with contrast) looking for lesions to rule out possible MS because of sx i now am having that mimic MS. Some things have showed up.

Now I'm not so sure that they are going down the right path. I know medicine is not an exact science and Dr's don't know everything. But they can at least make us feel like we are not crazy. I am about to give up. Eye sight is not getting any better, the last MRI pretty much ruled out MS. Now I am back to square one.

In looking at the MRI report and looking up the medical jargon they use, I found that maybe my problem is that I had a stroke of the optic nerve.
Does anyone else have this condition? Looking for answers in hopefully the right place. Seeing the 2nd opinion opthamologist on Monday to discuss the results and where we go from here
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Unread 11-10-2012, 09:01 AM   #3
mrsD
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I think you should both have a homocysteine test. This will show if you are low in 3 B vitamins that convert homocysteine to SAM.

Low B12 is usually the culprit. But also B6 and folate are needed for this conversion.

High homocysteine inflames the insides of blood vessels and can lead to blood clots. It can show up first in the eyes, either the optic nerve or retina.

Optic neuritis can also be due to low B12 levels. Get a blood test for this, and you should be at 400 pg/ml minimum. Some lab ranges still go below this and don't flag the results as LOW when they are. So ask for the numbers on your tests, always.

Low B12 is pretty common and can be caused by being vegan and also using metformin RX or acid lowering drugs for heartburn.

If you decide to use a B12 supplement, choose methylcobalamin, the active form of B12. There is a rare, genetic defect some people inherit
that cannot convert cyanocobalamin to methyl form. It is called Leber's optical neuritis. So using the commonly prescribed form, cyano, may further damage the eyes if you have this defect.
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Unread 12-01-2012, 06:57 PM   #4
RMS01
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Quote:
Originally Posted by rbrehany View Post
... Apparently once the optic nerve is damaged nothing short of advancements in stem cell research give us a chance to gain the vision back....
I've regained about half of my damaged vision in approximately six months. I had some kind of damage to the optic nerve in late 2011. My amsler grid looked like one of those paper targets at a shooting range - after a busy day. I suspect pernicious anemia, doc says migraines.

Anyway, symptoms stopped getting worse in March when I started taking bunches of B vitamins. Some of the scotomas were getting noticably dimmer by Sept of ths year, and faded out in October.

Sometimes, optic nerve damage does heal. Hang in there. It may take many months.
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