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    Old 05-07-2007, 08:26 PM   #1
    asdf
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    optical neuritis....but now MS?

    I have learned a great deal since last Monday (7 days ago) when I awoke with a small white cloudy spot in my right eye. Since then, (i) I have been to the opthamologist twice with the conclusion of very mild optical neuritis, (ii) seen my white cloudy spot slightly grow in the center of my vision, and (iii) had an MRI scheduled this week with now the possibility of MS. WHEW!

    I have not felt any pain knock on wood, but my eye does feel slight discomfort sometimes...and I have felt occasional slight numbness on the right side of my face including the chin and cheek, as well as a weird sensation in my right arm and neck a few times. All of this is so mild that I feel I could be imagining it, but then again I ask if I was, why those consistent areas? Could these symptoms be ON?....could MS be responsible?

    Some history about myself - I do get the occasional headache in the back of my head from a weight-lifting incident about 5 years ago, and I have benign positional vertigo from what I believe was drinking too much in the past. With my new condition, I am starting to wonder if these excuses are now related to something much deeper I was unaware of. I am a 27 year old male working full-time here in the District with admission into law school part-time starting this upcoming fall. I have no close relatives with MS.

    I feel like I am starting to see just the surface of how much this is going to affect my life if I do in fact have MS. Some questions for those who wish to answer - whats the quickest and surest way to start taking the steriods/medication I have been reading about?....go directly to a neurologist? I dont quite understand how the process works. It seems though that if even someone was in question of possibly having MS such as me....what harm would it be to start taking the steriods now?....what harm would it be NOT to start taking the steriods now? How much could MS affect my life if I'm planning on working full-time, and going to school part-time?...is it even practical now?

    Its a kinda scary feeling right now this second week of having these conditions because I feel like I'm in the dark and I don't know what to expect. Thanks to anyone who wishes to answer or just reply and talk.

     
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    Old 05-07-2007, 09:32 PM   #2
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    Re: optical neuritis....but now MS?

    I'm getting deja vu -- I was pretty much exactly where you were 6 weeks ago. First thing, do not panic and take a deep breath. You're doing all the right things.

    Like you, I had something weird with my eye and that was it. (Or should I say, until I got an MS diagnosis and began to think about other things I had previously dismissed, much like you...) I went to the eye doctor who sent me to a neuro-ophthalmologist. He told me I had Optic Neuritis and ordered a brain MRI. He told me that MS was a possibility and I was shocked. ON CAN be caused by a few different things but it very closely associated with MS so the brain MRI is usually ordered. I started out with a slightly "weird" pain with eye movement, graduated to a kind of "foggy" feeling and over a period of about 7-10 days my vision got progressively blurred. The neuro-ophthalmologist simply confirmed what my eye doctor had said, that it would go away on its own. He never mentioned steroid treatment, which is often how Optic Neuritis is treated.

    My MRI showed 5 lesions and he sent me away with a referral for a neurologist who specialized in MS. I talked to my internist before I made the next move and he actually wound up seeing a different neuro-ophthalmologist. She explained that if I had gone to see her right away that she would have put me on steroids (IV treatment followed by a course of oral -- there are reasons for treating that way which we can explain more about if you'd like). However, by this time some weeks had passed, there were signs of improvement so she wasn't as adamant about the steroid treatment. Here I am now, 6 weeks later and the vision in my left eye is MUCH improved. (I'll actually know more tomorrow when I go back to see her!) Oh -- I should also mention that she ordered an MRI of my orbits so she could see how inflamed the nerve was and although I'm not 100% on this, it also may have been to see if there was any visible infection. (ON CAN be caused by an orbital infection.)

    She sent me to an MS specialist and he confirmed the MS diagnosis. My diagnosis was made by past history (yup, all the little things I'd dismissed like the stuff you're now thinking about), the brain lesions and the Optic Neuritis. I also have no history of MS in my family, at least no one who was diagnosed!

    I've shared this with you because our stories have similarities. That said, you are on the RIGHT TRACK. You're getting the MRI and if the report shows lesions, your ophthalmologist will be referring you to a neurologist, likely an MS specialist. That doctor will eview your history and possibly order some more tests.

    You may have 2 issues to deal with in terms of drugs. You'll talk about and decide if you should do the steroid treatment for the ON with your eye doctor and if you DO get an MS diagnosis there are different options for treatment on that front that are meant to keep the disease from progressing (they're not steroids, most of them are types of interferon). Your doctor will discuss that with you and people on here can give you lots of good information on that front! I chose to not go on medication at this point but I am at a very different place in my life than you are.

    I definitely recommend that you make sure your regular doctor knows what's going on and also that you get copies of any radiologist reports. Just always good to have and until you're sure that you have the doctors on board you want to stick with, might be best to hold on to any MRI films yourself.

    Keep us posted and good luck! It sounds like you're in very good hands so do not worry!

    Last edited by Bearygood; 05-08-2007 at 07:02 PM.

     
    Old 05-07-2007, 09:43 PM   #3
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    Re: optical neuritis....but now MS?

    short answer to your questions only because i am tired..

    MS is NOT the end of the world.. not even close.. it has its bad points but there are many people who still work full time, go to school, do everything they use to do.. i know a few people who have had it for over 30yrs and they still get around fine and show no real signs of disability.. the harm in taking the steroids they give us with MS is only if you are given high doses for a long period of time..

    there is no harm in starting one of the MS meds before you have a diagnosis.. though i doubt most Neuros would be willing to give you any until they diagnosed you..

    truth is none of us with MS really know what to expect.. but we just learn to take it day by day..and keep our fingers crossed that we stay stable.. and nothing new turns up..

     
    Old 05-08-2007, 05:47 PM   #4
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    Re: optical neuritis....but now MS?

    Thank you Bearygood and Punkdizzle for your responses, you have no idea how much your input has affected and calmed me. I really had no clue what was happening and how far this current ON flare-up could possibly take me. I'm now understanding that this condition if MS is a fairly slow process, with time to allow oneself to stay on the right track in keeping up with it.

    Most importantly, I'm just happy with how well I've handled all of this and have determined to go on with my daily routines and life aspirations that have already been in place. If anything, it has already helped and will continue to help my diet, exercise, and well-being.

    Since the last posting, nothing much has changed from what I described (maybe now the feeling of definite occasional right arm/cheek/chin discomfort where before I though I could be imagining it) and I do have the MRI coming up soon so I will post soon again. I believe the next step is choosing a neurologist specializing in MS depending on the results of the MRI.

    Thanks again.

     
    Old 05-08-2007, 06:33 PM   #5
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    Re: optical neuritis....but now MS?

    asdf, glad we could help. Re: your ON, I've never heard of a "mild" case but I guess that means that the swelling of the optic nerve isn't severe enough to cause additional and more severe symptoms. That said, do monitor it though! Mine was full blown and as per my visit today, my eye keeps on improving. My doc expects full recovery or at least very close to it -- again, if the nerve is just inflamed and not damaged, it is not unusual to improve on its own without steroids but if it ever happens again, (no guarantee either way with ON), I now have firm instructions to get my booty in to see her and start steroids immediately!

    Good luck to you and please keep us posted. I'm sure your experiences will serve to benefit someone else, just as ours have hopefully helped you.

    Last edited by Bearygood; 05-08-2007 at 06:34 PM.

     
    Old 05-14-2007, 11:28 AM   #6
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    optical neuritis....and now MS

    As far being three weeks into the optical neuritis (I have been blessed that it has been painless thus far as I have read this is very uncommon), the spot has continued to become much bigger to the point I am pretty much relying on my left eye only. now Up to today, I have felt occasional numbing in my right arm and the right side of my face. I even experienced last Wednesday a burning sensation in my jaw that lasted for about an hour, before I took a nap and it went away abruptly. I've noticed body temperature plays a big role in how I'm feeling, the AC in our building turned on finally last week, and up until then the warm nights seemed to strengthen the optical neuritis...as well as feeling like I had a fever. When the AC finally kicked on, I went right back to how I felt before.

    I learned today the MRI I had last Thursday showed a few white matter lesions (MS now more clear), one supposidly responsible for the eye problem. I will start steriod treatment tomorrow for what they are calling a three-day period of IV in-patient treatment.....looking forward to feeling better!

    Thanks again for the replies.

     
    Old 05-20-2007, 03:53 PM   #7
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    Re: optical neuritis....but now MS?

    My wife has had similar symptoms to the ones described by asdf for the past 5 days. She also has some pain (headache). The ofthalmologist ordered MRI and it has shown some white matter problems. We will be visiting a neurologist tomorrow...

    Your thoughts and comments were very comforting to me and it gives me more confidence on how to discuss this with my wife and how to manage this issue. I hope she does not have MS but she definitely has ON. She does not want to take steroids because she thinks they will have some side effects. Do any of you have some comments on this?

    Thanks for being there!

     
    Old 05-20-2007, 05:06 PM   #8
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    Re: optical neuritis....but now MS?

    Hi, gmac! Each of us can only share our own experience and results of our own research and doctors' opinions. (As stated in previous posts, I am currently recovering from ON without medication.)

    In terms of physical side effects, others who have been treated can give you better info. than I in regard to this course of treatment for ON. In general, I've witnessed some side effects from people on oral prednisone in the form of weight gain -- but who cares about that if the medication is working and there are benefits? Very small price to pay!

    When I first began this process I found what I thought was VERY conflicting info. on the benefits and risks of steroid treatment for ON and then my eye doctor clarified some of the studies. Here's the breakdown according to my doctor. She said that it has to be IV corticosteroids followed by a course of oral steroids. Oral alone will not do the trick and she confirmed that some studies DO indicate that this may present a risk itself. (I had read things about increasing the risk of another occurrence of ON and even some theories about the possibility of making you at more risk for aggravating MS or even developing it!)

    Additionally, I'd read a few differing things about IV followed by oral. All the current info. I've seen seems to support that IV followed by oral is beneficial to recovery and has no adverse effects long term. It's also been theorized that this course of treatment may have an added long term benefit in that it may delay the onset of MS or another ON attack. And although there are OTHER studies that dispute that finding (long term benefits), there is currently no evidence about negative effects like there was with being treated solely with oral steroids.

    Hope this info. helps. By the way, by the time I saw this new eye doctor I was pretty far along into Optic Neuritis. It normally has a curve where it starts, peaks and then kind of goes backwards like you hit the "rewind" button! Since I was already on the mend we decided to closely monitor my progress. I was doing well enough on my own so that she was supportive of me not going on steroid treatment but made it clear that if I had seen her when it began, she would have insisted.

    I think it really depends on your own individual situation and then making a decision based on research (including what you're doing here) and talking to the doctor. In most cases, IF the optic nerve is okay, you can usually expect full recovery or very close to it without meds but every case IS different. One thing is for sure -- if your wife does go on steroids, her vision will improve much faster.

    I know firsthand that this is very confusing but I hope this info. helps and that things are otherwise good in your fine city!

     
    Old 05-20-2007, 05:14 PM   #9
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    Re: optical neuritis....but now MS?

    Ah, asdf -- so much for the "mild" ON! Yep, it usually gets worse before it gets better. Like I posted below, it reached a peak with me and then it was like hitting the rewind button! That's exactly what my eye doctor said was supposed to happen and I continued to go back and be monitored closely. First thing to show distinct improvement through testing was visual field but if it hadn't been distinct, I would have been put on IV followed by oral. I'm sure your "rewind" will be very fast! I'm curious -- do they intend to follow your IV treatment with oral steroids?

    Hope you feel better soon and I'm glad you're getting some answers!

     
    Old 05-20-2007, 06:17 PM   #10
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    Re: optical neuritis....but now MS?

    Hi gmac01, I would more than happy to discuss my recent treatment of ON using corticosteriods. Because of my good health condition, the neurologist concluded that a three day out-patient treatment would be effective enough in helping reduce the inflammation. I had a nurse come into my apartment and place the tube in me the following morning, and the procedure of fluid replacement was easy the other two mornings when I did it all myself (though I was kinda grossed out when I had to take it out of me).

    For what I personally experienced from the corticosteriods, I do feel it was well worth it as my right eye became much better over the three days. I am even now able to even read through the right eye and see color, something I didn't think was possible at the recent rate I was supposidly getting better before I took the corticosteriods. There are definitely two "phases" of the treatment, one for the days your actually taking the corticosteriods (I felt uppity, couldn't sleep the first night, felt random fevers like the flu even though my body temperature was normal, and had some heartburn), and the time after you are done like what I am going through now (I feel kinda out of it, drained, very tired - I swear I couldve slept all day today if I let myself).

    I am not taking any oral after the IV treatment, so I still could have a few rough days ahead coming off this stuff. As Bearygood mentioned, taking oral can even back-fire and I'm willing to "shock" my body with a stiff dosage of IV corticosteriods without following up with any oral.

    I do know the longer you wait on corticosteriods, the ON may transition from its acute phase to its chronic phase where the healing has already begun and the steriod treatment will be less effective. Neurologist prefer to treat ON head-on during its acute phase to allow the patient to see the most possible improvement. Let me know if you have any more questions.

     
    Old 05-20-2007, 06:26 PM   #11
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    Re: optical neuritis....but now MS?

    asdf, I had to smile at your post. Amazing how little time it takes to become a seasoned expert, isn't it? You really described that "chronic" and "acute" phase better than I did and as you know, that's what happened to me -- I was already on the mend when it was considered.

    Interesting that the IV treatment isn't being followed by oral. Do you know anything else about that and the reasons why? I've heard of this for other symptoms but not normally for ON. I wonder -- is it because the steroid prescription came from your neuro and was in consideration of all your symptoms combined, not specificially the ON?

    Glad you're feeling better!

     
    Old 05-20-2007, 06:27 PM   #12
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    Re: optical neuritis....but now MS?

    Hi Bearygood. You were right, so much for the "mild" ON. After reading what I did in the books, I figured my ON was going to be much worst when in fact I was experiencing almost as bad as it could have gotten (besides the lack of pain). As I mentioned to gmac01, no oral treatment was concluded by the neurologist.

    I have an interesting fact I came across in one of the several books I have been educating myself on MS and ON that I would like to mention to you and gmac01. Take corticosteriods on a first relapse of MS could prolong the period between the first and second relapse for at least two years, so it sounds like corticosteriods could actually slightly alter the course of MS.

    I do have a few questions for you if you wish to answer. Right on my first day of not being on the corticosteriods, the numbness on the right side of face started to come back quickly. Do you have any idea what this could be related to?....the ON?, the other potential lesions found in my MRI? Does this rule out the possibility of a benign ON case?, and something much deeper?

    Looking forward to keeping in touch!

     
    Old 05-20-2007, 06:34 PM   #13
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    Re: optical neuritis....but now MS?

    Hi, yes, that's one of the things I read -- and actually read mixed things about. My eye doc isn't convinced that's definitely true but does feel that there COULD be this benefit. Certainly, she felt that there were no adverse long term effects. Also, to clarify, she confirmed that the findings about oral were negative (in the studies to which I referred) when they were NOT preceded by IV.

    I'd call your neuro immediately about the numbness. I don't think that numbness could have anything to do with Optic Neuritis but certainly, it could have to do specifically with MS. Not sure what you mean by "benign" ON since with your MRI results, it does seem to be MS related...

    Last edited by Bearygood; 05-20-2007 at 06:35 PM.

     
    Old 05-21-2007, 09:05 AM   #14
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    Re: optical neuritis....but now MS?

    Hello bearygood,

    My wife came back from the hospital a few hours ago. The neurologists confirmed the optic neuritis diagnosis and the first IV steroid treatment has already been administered. As your doctor suggested, he urged us to start the treatment ASAP. A course of 5 IV daily treatments will be followed by oral steroids. He said that the white matter lesions were barely visible on the MRI. He also asked us to visit the ophthalmologist again in 10 days for a follow up eye exam to monitor progress. In a few weeks we'll decide what is to follow. It seems that my wife will have to have another MRI in about 6 months time. He did indicate that even though the symptoms were "light" the possibility of MS is about 30% in the future. However, he said that it would be fully treatable.

    By the way a doctor friend of mine suggested this article on ON: [url]http://www.emedicine.com/radio/topic488.htm[/url] It has a lot of information and needs to be read carefuly but I found it quite informative and factual.

    Cheers to NYC!

     
    Old 05-21-2007, 08:28 PM   #15
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    Re: optical neuritis....but now MS?

    Good to hear, gmac. Hope your wife feels better soon!

     
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