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Old 02-09-2008, 12:32 PM #1
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Default Anyone experience this?

I posted this in another forum, but got no response, so I'll try here.

I have a SIL who has suffered with migraines all her life. She also has a sister with MS. Now for her situation today. She went to her opthamologist in Nov. for her regular eye exam/prescription. He dilated her eyes or whatever he usually does, but after that appt. she started getting severe headaches, and started losing her vision.

They did an MRI suspecting ON & MS, but no lesions. They didn't do the dye because it was normal. Anyway, she had an angiogram of her eye the other day, and they told her that her eye is perfectly fine, but the nerve is damaged, and won't get better.

They are sending the tests on to specialists in Salt Lake, because they can't put a finger on what may have caused the blindness. I guess your eye is divided into three parts, one is totally black, one gray, and one white. So she is only seeing a small portion with the one eye.

She is very depressed and I'd like to give her some advice/direction that may help her with this problem.

I have MS, but have never had any troubles with ON, so I don't know if what she is experiencing could be ON, or some other weird disease. She has had a lot of stress lately because she has been taking care of her mother who has alzheimers.

Any help/advice would be appreciated!
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Old 02-09-2008, 02:06 PM #2
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So sorry to hear this! She must be flipping!

I don't have any advice, just my personal experience with ON.

When I had ON, it was right eye, everything was gray, sort of like fog or the snow from an old black and white TV after the signal went off for the night. I could see a very small portion ( I'd look at someone and could only see their face, no hair, no body...) but even that was foggy. I had no pain at all and that seemed to surprise the Opth.

Did they do anything for it, steroids or anything? It seems odd that nerve damage would come on suddenly like that with no antecedent.

The optic nerve can recover from damage. I am living proof of that.

I hope she finds out what is going on. Please let us know and hang in there! You are a good SIL.
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Old 02-09-2008, 02:11 PM #3
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I've never had ON so I have no frame of reference to lend any guidance. I would suggest that she take these test results to an experience MS neuro for further evaluation.

This could very well be the beginning of symptoms for her. They all have to start somewhere and there is no time like the present to start a full medical evaluation.

Start with her PCP and work up from there. She will be amazed at how much she will learn. No way this episode can be related to stress. This is a specific psyciological occurance that needs further evaluations.

Help her move on one step at a time. No reason to really panic although loss of vision is NO fun.

Please keep us informed as we are all concerned about this.
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Old 02-09-2008, 03:48 PM #4
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Sorry to hear about your SIL. Wow, I wonder if she could be experiencing an optical migraine? I've dealt with migraines for years, but to my knowledge have never had an optical migraine.

I'm currently on my fourth bout of ON but have never experienced something like your SIL, although ON seems to have different sx for different people. From what I've read, ON very rarely attacks both eyes at once. For me, it started with pain each time, first stabbing pain in the eye, then pain when moving from side to side, sort of a pulled muscle feeling. Next, the blurry spots, sort of like having grease on your contact or lens. Finally, I noticed that reds and vibrant colors were a couple of shades dimmer, sort of like wearing sunglasses. I've been told in all cases my optic nerve looked good, despite the ON.

I've had my eyes dialated countless times and have never had your SIL's experience. I think Craig's right - she most likely needs to see an MS neuro, but start with the PCP and work your way up.

Please let us know how your SIL is doing.
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Old 02-09-2008, 06:32 PM #5
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Thanks for the replies. I just hope she finds some answers. The opthamologist really seems to think the nerve damage is done. My brother wonders if it was something put in her eye during dilation, but of course the doc wouldn't say this was it by any means.

She has seen three different eye doctors, besides the neurologist.

To top it off, her oldest daughter just miscarried today. This all happened while she was taking her second daughter to get her bridal photos taken, and then had to hold a bridal shower for her that the oldest had planned, but was now unable to host since she suddenly miscarried.

Sometimes life just isn't fair!
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Old 02-09-2008, 07:14 PM #6
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Hi B! I have't had ON but I do have uveitis that my retinologist feels is related to the MS. Has your SIL seen a neuro-optho or just her regular optho? I feel for her going through all of this at once! It is overwhelming to say the least. My thoughts are with her.
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Old 02-09-2008, 07:16 PM #7
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i'm so sorry that your sil is going thru this.
and prayers to her family.

i can't offer advice.
i was going to suggest another opinion but sounds like she's been to several drs.

maybe an eye specialist.
or she could try googling her sx's and see what she finds.
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Old 02-09-2008, 11:44 PM #8
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Bless her heart....

I can not imagine how she must feel going to the doctor and then having that happen.

I agree with NurseNancy....

Sent knee mail up for her!
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Old 02-10-2008, 01:45 AM #9
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Quote:
Originally Posted by 4boysmom View Post
Thanks for the replies. I just hope she finds some answers. The opthamologist really seems to think the nerve damage is done. My brother wonders if it was something put in her eye during dilation, but of course the doc wouldn't say this was it by any means.

She has seen three different eye doctors, besides the neurologist.

To top it off, her oldest daughter just miscarried today. This all happened while she was taking her second daughter to get her bridal photos taken, and then had to hold a bridal shower for her that the oldest had planned, but was now unable to host since she suddenly miscarried.

Sometimes life just isn't fair!

What a horrid time you're having right now. Hugs to you, your daughter and grand daughter.
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Old 02-10-2008, 11:29 AM #10
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Quote:
Originally Posted by MSCherokee View Post
...From what I've read, ON very rarely attacks both eyes at once...
While this is generally the rule, we all know that there are exceptions to every one :-)

I had ON in both eyes, although one was worse than the other.

My right eye was "legally blind". I could seem some light out of it, but the vison measured 20/400.

My left eye was better, it was only 20/100.

If any of your sisters doctors are thinking that it could be ON, your sister needs to push for IVSM as soon as possible. The longer ON lasts, the more chance of permanent damage.

It took about 10 months from the time I noticed that something wasn't quite right with my vision, till the time I had IVSM.

None of my doctors were very optimistic for a good outcome, because of the time I suffered with it.

At two weeks post IVSM, my vision was 20/35 and 20/75. Nowhere near what my vision was pre-ON, but good enough to make my opthalmologist clap his hands, jump up and down and squeal!!!
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