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Old 02-24-2012, 12:33 PM #1
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Strhuntrss Strhuntrss is offline
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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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Old 11-10-2012, 08:26 AM #2
rbrehany rbrehany is offline
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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...









[/CENTER]
Quote:
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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Old 11-10-2012, 09:01 AM #3
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Lightbulb

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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Old 12-01-2012, 06:57 PM #4
RMS01 RMS01 is offline
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Default

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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Old 06-14-2016, 02:26 PM #5
JanettePeterson JanettePeterson is offline
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Default My Stroke on the Optic Nerve -- 5-15-16

Hello,

I just suffered a stroke on my right optic nerve on May 15, 2016. In 12 days, I lost my vision on my right eye. I went from seeing an ophthalmologist, to a retina specialist, to a neuro-ophthalmologist (a neurologist just for the eye). This latest specialist was the one who diagnosed me with "Ischemic Optic Neuropathy", or stroke on my optic nerve. I went through numerous tests: two MRI's to rule out MS, blood count test, clotting of the blood, ultrasound of the carotid arteries, Lyme disease, even a biopsy to rule out "Temporal Arteritis". I also took 60 mg. of oral steroids, and when that didn't work, I was admitted to the hospital for intravenous steroids (1,000 mg. a day for three days), but this didn't even touch the swelling of the optic nerve. In fact, while in the hospital, my vision got worse. Furthermore, ALL of the tests came back negative or normal. As it turns out, doctors are stunned. They do not know why I got this. My ophthalmologist said that it could be that I have very tiny blood vessels in the eye, and the smallest clot can get caught. I am now taking a baby aspirin a day. There is another possibility, which I think it is the culprit of my problem. I've taken Lanoxin/Digoxin .25 mg., which was consider a very safe drug for the past 30 years, to control a heart condition called "Supraventricular Tachycardia". Now, 30 years later, my husband found on the Internet that it can cause issues on the optic nerve and cataracts. I am a healthy 56-year old woman, who exercises often and eats right. I never would have thought that I would have vision problems at this 56. This has been a very tough and trying time for me. Tomorrow, it will be one month since I woke up with a blurry vision in the corner of my right eye. Now, I'm facing the fact that I have to get used to seeing the world with one eye. I'm heart broken. I have my 'O.K.' days, and days when I cry and feel sorry for myself. This is the hardest thing that I've ever had to endure. Any words of encouragement will be greatly appreciate it. I really need them!! Thank you.






Quote:
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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Old 06-14-2016, 03:06 PM #6
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Lightbulb

There is a connection to low B12 and optic nerve problems...
Undiagnosed low B12 can lead to blindness and neuritis.
High homocysteine levels indicate a possible low B12 level along with issues with folate, and B6. High homocysteine causes irritation to the blood vessel lining and hence can cause clots in the retina or optic nerve.

People with the mutation in methylation called MTHFR may develop high homocysteine because the B12 and folic acid in the diet cannot be methylated (activated to is biological useful forms). There is a DNA test you can ask for to see if you have this genetic problem.

more at
MTHFR Mutation | MTHFR Gene Mutation | What is MTHFR? - MTHFR.net

You can become low in B12 (the new low in testing today is
400pg/ml), if you are vegan, use acid blocking drugs long term,
have pernicious anemia, or low stomach acid for other causes (aging is one).

So if you haven't investigated these factors, I think you should.


Quote:
Originally Posted by JanettePeterson View Post
Hello,

I just suffered a stroke on my right optic nerve on May 15, 2016. In 12 days, I lost my vision on my right eye. I went from seeing an ophthalmologist, to a retina specialist, to a neuro-ophthalmologist (a neurologist just for the eye). This latest specialist was the one who diagnosed me with "Ischemic Optic Neuropathy", or stroke on my optic nerve. I went through numerous tests: two MRI's to rule out MS, blood count test, clotting of the blood, ultrasound of the carotid arteries, Lyme disease, even a biopsy to rule out "Temporal Arteritis". I also took 60 mg. of oral steroids, and when that didn't work, I was admitted to the hospital for intravenous steroids (1,000 mg. a day for three days), but this didn't even touch the swelling of the optic nerve. In fact, while in the hospital, my vision got worse. Furthermore, ALL of the tests came back negative or normal. As it turns out, doctors are stunned. They do not know why I got this. My ophthalmologist said that it could be that I have very tiny blood vessels in the eye, and the smallest clot can get caught. I am now taking a baby aspirin a day. There is another possibility, which I think it is the culprit of my problem. I've taken Lanoxin/Digoxin .25 mg., which was consider a very safe drug for the past 30 years, to control a heart condition called "Supraventricular Tachycardia". Now, 30 years later, my husband found on the Internet that it can cause issues on the optic nerve and cataracts. I am a healthy 56-year old woman, who exercises often and eats right. I never would have thought that I would have vision problems at this 56. This has been a very tough and trying time for me. Tomorrow, it will be one month since I woke up with a blurry vision in the corner of my right eye. Now, I'm facing the fact that I have to get used to seeing the world with one eye. I'm heart broken. I have my 'O.K.' days, and days when I cry and feel sorry for myself. This is the hardest thing that I've ever had to endure. Any words of encouragement will be greatly appreciate it. I really need them!! Thank you.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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