Just a thought - NO pressure. . .

[sllowe]

I'm wondering if anyone is up to pulling together info on ON from our group.  

We have so many eye issues from ON, to migraines, blurry, doublevision, etc.  

Many have mentioned how the symptoms are so varied.  I myself don't even know if I've had it, but I do have some symptoms that are mentioned in the posts a lot of times.  Seems to me that allergies cause some similiar symptoms too at times.

Soooo, here goes!  Who would like to start digging up some of our more informative posts on this topic?  I know there are a quite a few thread that will have to be sifted through, but believe it will be well worth it.  

Any takers?  Once it's pulled together, we have some great writers I know.  Off the top of my head "Ess" you are durn good girl!  And there are others too, I'm just not through my second cup of Joe yet and can't think.

Let me know if you are interested pretty please, w/ice cream and doughnuts crumbled on top?

Love ya's!
-SL

[wonko]

Hi!  Can I chime in with a couple specific Q's about eye issues?  If ya'll are gonna dig and put something together, I'd really like to know......

1.  Motion-induced Flashes  -- associated with ON or not???  It seems it depends on who you ask.  My opthamologist said it is not an ON symtpom, but if you google "movement phosphenes,"  stuff about MS and ON comes up.  I'd love a good final word on that one!

2.  From what I've read, it sounds like ON starts with pain, and vision changes can happen later on.  Also, I've read the pain can vary a lot from mild and intermitant to sharp and more constant.  So my Q is, I've had some vision changes, but am still getting eye pain.  Does this mean my vision could get worse, or is it just too hard to say?

3.  BIG ONE:  How is this condition diagnosed?  My opthamologist ruled out retinal problems, but offered no explanation.  I've head that if there is nerve damage, it may not be visible from an eye exam.  That makes sense to me, but then what else should they do to test?  I've heard some people say MRI and VEP.  Can an opthamologist order/carry out those tests, or might I need to mention this to a neurologist?  

4.  Bilateral?  I think I read that 70% of ON occurs in one eye.  But of course that just means that in 6 out of 20, it can affect both eyes.  Is there any ON info specifically imortant to bilateral cases?

5.  Recurrance.  I've read a lot of posts where people talk about ON coming back!  Is this common?  Are there any meausres one can take to help out eye health?

6.  Treatment and healing.  I've read a lot of ppl state that it can take months, even YEARS for vision improvement, but I'm not how treatment affects recovery, or what the treatment is.  Would love to know more!

Phew.  Long list, I know!  I'm not a medical expert, but I'd like to help in getting answers we trust to these Q's.  You mention wanting volunteers, not sure if any board member qualifies, or what resources you'd want ppl to use, etc.  but if you get back to me with those details I'd be happy to try and help with research for some answers after work.

Thanks, & hope everyone has a good day!

[angie99]

Good morning, hope you are doing well. I have had eye symptoms also...everytime I get all my other symptoms I get the eye stuff too, I have been to 3 opthom and all they can report is a posterior vitreous detachment(partial) floaters, flashes of light and pain...one eye doc reported differential diag; CNS Lesion....I have read that a vitreous detachment can be caused by inflammation, and only 50% of ON can be detected by an opthom.

Question: Can a person request that their test results be faxed to their home? like if you get an mri can you ask the radiologist to fax a copy of report to you?

[essdipity]

Though my VEP was abnormal my eyes are basically fine, so I haven't delved much into the world of ON. But if someone, or much better, lots of someones, filters out the info, I'd be glad to put it together. Thanks for the compliment, SL.

ess

[ohwild]

sure sounds good, I dont mind helping, but you can sift the info i would end up making a right mess lol
CJ

[sllowe]

Well, I haven't organized this much in my head...lol, but thinking someone could start sifting through our MS threads by using the "search" feature.

From the useful ON discussion threads that are found, the text can then be copied and pasted on a word application. Saved, added to, edited, etc.

From there, thinking we can weed through it further and get some sort of a write up rolling that would eventually become a health page.

thoughts?

[ohwild]

hmmm doughts are off the menu today lol, but ice -cream would be very welcome :) what do you mean by pull some threads up?
CJ