? Optic Neuritis

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AllyB
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? Optic Neuritis

Post by AllyB »

Hi guys

Pardon my ignorance folks, but I need some personal experiences of ON from anyone willing to share...

I saw my Neuro on Monday, and during my routine exam, he spent a lot of time both looking into my eyes with that little light thingy and asking me to follow his finger - then he asked me if I had any vision problems.

I have, for about the last week or 10 days or so, had pain in my rt eye when I move it, and the vision seems a bit more blurry - but nothing huge - I still have reasonable sight etc. None of this worried me unduly - I would not have mentioned it to him if he had not asked, but after pondering a bit he decided that my eyes were fine.
That experience was a bit of a red flag to me as he went on to emphasize that if anything worsened etc I had to come straight in for steroids...

My question(s) is (are), can a Neuro really tell if you have Optic Neuritis just by looking at your eyes, especially if the attack is mild, or very recent/still in progress? Should I see an eye specialist, and can they tell any better? I am not by any means knocking either medical profession I know that they are all very clever - I am just looking for some opinions from fellow forum members!
I don't really want any more steroids (or scans), but at the same time, I don't want my vision to get bad as happens to so many folks with ms - I also know that steroids will not necessarily change the outcome....!

So far my MS symptoms have completely avoided my eyes (except for a very early - 8 years ago - mild visual issue that completely resolved) - but all my MS symptoms are and have always been right-sided, and it is my right eye that is a slight worry now...

Sorry for the epic story, opinions would be most welcome, and I know that they are just opinions - I just don't know if my situation warrents me leaving it with my Neuro's ok, or if I should see someone else too...I may be just parranoid! Wish this had a spell check...

Thanks for all the support.
Al
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Post by Loriyas »

Ally
Was he maybe looking for nystagmus (where your eyes don't stay still when you focus)? I have had that, more in my right eye than my left, and I can feel it "flutter" so to speak. I am pretty sure optic neuritis can't be seen without a special instrument which allows the doctor to see the optic nerve inside. Maybe EyeDocFl will be along to explain better than I can.
Lori
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MrsGeorge
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Post by MrsGeorge »

ON is how my symptoms started.

I had pain on movement and v painful light sensitivity along with affected vision - it was blurry but I also lost a big chunk of my visual field.

I saw a opthamologist rather than a neuro and he was able to appreciate the ON using a light and looking - but he used a whole bunch of other machines to peer and make checks etc. If you are at all worried get yourself to an eye specialist or ask for a referral. Neuros are great but they aren't eye docs.

My ON cleared up without treatment and though there is some damage to the nerve that that the eye doc can see, as far as I am aware my vision is pretty close to what it was - no easily noticible difference.

Hope you're ok.
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AllyB
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Post by AllyB »

Hi guys

Thanks so much for the responses - it hasn't got any worse (thank you God!), so will probably wait a bit and see what happens. I think I am probably being a scaredy-cat (typical with this disease)!
The Neuro didn't really mention what he was looking for, except he seemed concerned when I was following his finger with my eyes - he made me do it repeatedly, and when I told him how my eye felt, he reminded me to come straight to him (no appointment necessary) if I felt I was having another relapse...It was a monday - the day after my Avonex, so I was feeling a bit under the weather and didn't pay a lot of attention until I thought about it after...

Anyway, I love this forum - there is always someone who knows how you feel and can empathise - I really appreciate it - thanks again.
Al
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Murph
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Post by Murph »

Hi Ally,

It's great that you posted your question about your eyes on here because I have noticed my vision seems far more blury (at times ) than usual and I have just ignored it thinking maybe I just need to wear my glasses more, but I have hesitated in phoning my Neuro because as I usually do, I feel like I am just panicking & think becuase its not really bad then I can wait umtil I see him next. But as you know it's really hard with MS because we all daily suffer different symptoms and it's so hard to know what is the MS or perhaps something else!

I see my Neuro soon and I will mention to him that since my last relapes which was a small one, that my sight has changed.

Thanks for posting your thoughts, makes me feel a bit better about asking questions.

By the way I wish this had spell check too, he he! :roll:
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Re: ? Optic Neuritis

Post by EyeDoc »

AllyB wrote:Hi guys

Pardon my ignorance folks, but I need some personal experiences of ON from anyone willing to share...

I saw my Neuro on Monday, and during my routine exam, he spent a lot of time both looking into my eyes with that little light thingy and asking me to follow his finger - then he asked me if I had any vision problems.

I have, for about the last week or 10 days or so, had pain in my rt eye when I move it, and the vision seems a bit more blurry - but nothing huge - I still have reasonable sight etc. None of this worried me unduly - I would not have mentioned it to him if he had not asked, but after pondering a bit he decided that my eyes were fine.
That experience was a bit of a red flag to me as he went on to emphasize that if anything worsened etc I had to come straight in for steroids...

My question(s) is (are), can a Neuro really tell if you have Optic Neuritis just by looking at your eyes, especially if the attack is mild, or very recent/still in progress? Should I see an eye specialist, and can they tell any better? I am not by any means knocking either medical profession I know that they are all very clever - I am just looking for some opinions from fellow forum members!
I don't really want any more steroids (or scans), but at the same time, I don't want my vision to get bad as happens to so many folks with ms - I also know that steroids will not necessarily change the outcome....!

So far my MS symptoms have completely avoided my eyes (except for a very early - 8 years ago - mild visual issue that completely resolved) - but all my MS symptoms are and have always been right-sided, and it is my right eye that is a slight worry now...

Sorry for the epic story, opinions would be most welcome, and I know that they are just opinions - I just don't know if my situation warrents me leaving it with my Neuro's ok, or if I should see someone else too...I may be just parranoid! Wish this had a spell check...

Thanks for all the support.
I would see your eye doctor asap. Neurologists do not have the tools needed to inspect the optic nerve and detect subtle inflammation. Blurred vision and eye pain with eye movement in an MSer is a huge red flag for optic neuritis. Even if the symptoms are mild at this point, this does not preclude the symptoms from worseing quickly and causing permanent damage to the nerve. If it is optic neuritis you need to be treated.
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Post by AllyB »

Hi Eyedoc

Thanks so much - everyone has been so supportive, but this is the kind of direct advice that stops me from dithering - I am a bit of a ditherer - hate to appear a hyperchondriac!
I still have pain when I move my rt eye and my vision is more blurred, although I don't think I have lost vision. This has been for about 2 weeks now...
We have a long 4 day weekend now for Easter - I will make app with Opthalmologist on Tues when everything opens up again - hopefully he will see me soon - I know him quite well and he is a really nice guy, so I think he will. I was just so hesitant to second guess my Neuro as I wasn't sure how this was diagnosed, he seemed satisfied at the end of the exam, and it doesn't seem too bad.

Is On treated with IV steroids like other ms attacks, or is there drops for the affected eye, or other medication? I guess I am actually asking what the treatment would be if it is ON, and how effective is the treatment, in general?

Thanks once again for your time - it is much appreciated.
Al
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Post by EyeDoc »

AllyB wrote:Hi Eyedoc

Thanks so much - everyone has been so supportive, but this is the kind of direct advice that stops me from dithering - I am a bit of a ditherer - hate to appear a hyperchondriac!
I still have pain when I move my rt eye and my vision is more blurred, although I don't think I have lost vision. This has been for about 2 weeks now...
We have a long 4 day weekend now for Easter - I will make app with Opthalmologist on Tues when everything opens up again - hopefully he will see me soon - I know him quite well and he is a really nice guy, so I think he will. I was just so hesitant to second guess my Neuro as I wasn't sure how this was diagnosed, he seemed satisfied at the end of the exam, and it doesn't seem too bad.

Is On treated with IV steroids like other ms attacks, or is there drops for the affected eye, or other medication? I guess I am actually asking what the treatment would be if it is ON, and how effective is the treatment, in general?


Thanks once again for your time - it is much appreciated.
Generally, ON will be treated with IV Solumedrol, a steroid. The usual dosage is given over an hour, once daily for 3 days. This can be done in the hospital or at home through home healthcare. Last time I had ON (I have had it twice) I received the treatment at home on 3 consecutive nights. Also, you will generally be given an oral steroid to take for a couple of weeks and possibly longer depending on how well you are responding to the treatment.

There are no steroid drops for the eyes that can treat ON. The optic nerve is in the back of the eye and the only way to get steroids there is through IV and oral medications.

The treatment is very effective. Of course, it does nothing for the underlying MS, but it is wonderful in stopping the inflammation that is affecting the nerve.

Good luck :) I know it really stinks to have your vision affected, but with treatment in the vast majority of cases your vision will return to "normal" (is there such a thing with MS?).

I apologise for rambling, but one last thought...repeated ON attacks to our nerves due to MS over time can cause a weakening of the nerve and permanent vision loss. There are several here in this web community that can attest to that. Early intervention on the inflammation of the nerve is very important to lessen this affect over time, in my opinion. Never be ashamed of going to the eye doctor at the first sign of trouble!
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Post by AllyB »

Hi EyeDoc

Once again - thanks for all the time you have given!
So, basically, the treatment is the same as it would be for any other ms attack - high dose IV steroids over 3 to 5 days (I have had it a few times before for other relapses - 1 gram iv daily, both in hospital and in my Neuro's rooms - not pleasant, but better than waiting for the attack to just get worse!). After pondering on it, I realised I was having a blond moment (although I am a redhead!) - that eye drops wouldn't work, given the anatomy of the eye....But one can only live in hope.

I guess my biggest problem was in not being sure if I was having an episode of ON or not (given that I had seen my Neuro), and one doesn't want to appear a hyperchondriac (folks with ms are sensitive to this in many cases as some of our issues are not overtly noticable - they are subjective) and being too embarrassed to go to an Opthalmologist in case there was nothing wrong, combined with a tiny dose of denial or fear in case there was something wrong - maybe I thought if I kept quiet it would just go away!
It may still turn out to be nothing - if I have a problem, then you have really encouraged me to get help and that may help prevent any further damage, and even if my eye is fine (appreciate the 'good luck' wish - fingers crossed and all that), you have given me the courage to at least get it checked out and ignore the shame of bothering docs all the time when they can't find anything wrong!
So you have done a really good service to me (for which I thank you again - why do we worry so about what our doctors think of us?), and probably to others who are uncertain and who, on reading this, will get a consult about any problem that may be nagging at them.

Way to go!
Al
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Post by EyeDoc »

AllyB wrote:Hi EyeDoc

Once again - thanks for all the time you have given!
So, basically, the treatment is the same as it would be for any other ms attack - high dose IV steroids over 3 to 5 days (I have had it a few times before for other relapses - 1 gram iv daily, both in hospital and in my Neuro's rooms - not pleasant, but better than waiting for the attack to just get worse!). After pondering on it, I realised I was having a blond moment (although I am a redhead!) - that eye drops wouldn't work, given the anatomy of the eye....But one can only live in hope.

I guess my biggest problem was in not being sure if I was having an episode of ON or not (given that I had seen my Neuro), and one doesn't want to appear a hyperchondriac (folks with ms are sensitive to this in many cases as some of our issues are not overtly noticable - they are subjective) and being too embarrassed to go to an Opthalmologist in case there was nothing wrong, combined with a tiny dose of denial or fear in case there was something wrong - maybe I thought if I kept quiet it would just go away!
It may still turn out to be nothing - if I have a problem, then you have really encouraged me to get help and that may help prevent any further damage, and even if my eye is fine (appreciate the 'good luck' wish - fingers crossed and all that), you have given me the courage to at least get it checked out and ignore the shame of bothering docs all the time when they can't find anything wrong!
So you have done a really good service to me (for which I thank you again - why do we worry so about what our doctors think of us?), and probably to others who are uncertain and who, on reading this, will get a consult about any problem that may be nagging at them.

Way to go!
Haha! You make me sound like a superman of encouragement :) But I am nothing more than a scared MS patient like all of us, just with a little extra knowledge on the eyes!
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AllyB
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Post by AllyB »

Well, you being prepared to jump in here has been great for me (got me off my backside and prodded me to action) - I tell it like it is and my Mama brought me up to always appreciate other folks and all that!
Just stay away from Kryptonite :lol:
I have an app with Opthalmologist next week, but now I have it, eye feels a bit better...Why does that always happen?
Al
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MrsGeorge
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Post by MrsGeorge »

Hope it goes ok with your opthamologist AllyB
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AllyB
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Post by AllyB »

Hey there Mrs. G

Thanks very much - hope so too, will post if any worries.

Cheerio for now.
Al
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