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429949 tn?1224691579

Anyone recover from ON without steriods or any reatment?

I was just wondering if anyone has recovered from ON without steriods or any treatment at all. If so can you describe the visual recovery stages and recovery time?
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429949 tn?1224691579
There is something that I have noticed with the ones who have been dx with MS and some others on the forum. Like with the ON for example. It seems that most of the ones who have had it have had relapes. I also notice more activitiy with new symptoms that I don't seem to be having. I have symptoms, but they are the same ones that I have had from the start. It is hard to explain, but mine seems like one big group of things that came together and seem to be disapearing very very slowly one by one over the last two years. You know how when you get a cut it starts to heal little by little until it is just gone one day,  It has always been one cut but it slowly improves over time all together. That's a crazy way to try to explain it, but that is what my illness seems like to me. One injury healing slowly. I have noticed some of the others have very different things going on all the time. This doesn't seem to fit with what I am experiencing. Plus the fact that my neuro said that my lesions all look the same age and nothing new on MRI or no new attacks. I have about 10 lesions that according to my neuro apear to be the same age and what I am wondering if I had MS for that long wouldn't some of these lesions be of a different age? And why am I not seeing anything new? Maybe I really did have ADEM and it truly was a one time attack. I don't know how I am supposed to figure out which one it is without waiting. But on the other hand what if  it is MS and they figure it out too late and I suffer more disability not being on Medication? I think this is what they refer to as between a rock and a hard place! To be straight up honest I don't trust any doctors anymore! I am terrified to let down my guard and believe a word they say! Is this a normal reaction to all of this? I feel like a  rat in a labratory!  I have had a lot of strange things going on and I really feel like none of these doctors are looking at the whole picture here! I have been dx with some eye conditions like blepharitis, dry eye, and meibomian gland disfunction. I have read about these conditions. Blepharitis is imflamation of the eye lids and it is caused by things like dandruff which I don't have, Roseasa which I don't have or it can even be caused by staff infection and alot more things. It is on the rare side effects sheet list along with optic neuritis, meningitis and a dozen more things that I have had, for the paroxetine which I was started on six weeks prior to the attack. I never had any of these conditions before this attack. Not to mention all of the phyciatric symptoms that were sevier at onset that are also on the side effects list all under rare. Something here is not being tied together. When talking to all of my doctors I get the impression that they all believe that the medication has something to do with it. But they act cautiously when the subject is talked about. I am not saying that I know that this medication did this to me, but I do however think it played some sort of role in it either by provoking an immune response or directly. My neuro even let it slip that the medication  change is what started this whole thing and then once he realized what he had blurted out changed his statement to well, it may have been a contributing factor. When I asked him point blank he said that it has never been documented with this particular medication.  Do you think they know something they are not telling me? It drives me nuts the way they all dance around and disregard a medication that I was definatley started on six weeks before this happened and also that I have been dx with a  lot of the rare side effects that I had never had prior to taking it. They won' t even look at the side effects of this medication, and  I can't understand why! Any thoughts?

Santana
Helpful - 0
233622 tn?1279334905
I saw two regular neuros before I saw my MS doctor.

That happened because my insurance would not cover the MS clinic.

Our insurance changed at the first of the year and I was finally able to go to the MS clinic.

My PCP had suspected I might have MS and wanted me to go to the MS clinic but since I couldn't he had me go to a local neuro.

She is the one that ran all of the tests and decided the spots on my MRI were related to high blood pressure.  

My PCP was not happy with that answers because I had Optic Neuritis and a few other neurological things going on.

So I decided to try another neurolgist who claimed to know a lot about MS.  I saw her and she said the spots on my MRI were related to migraines.  I suppose I might get migraines but I am not sure.

My PCP was still shaking his head at that answer. So finally our insurance changed and I was able to go to the clinic.  They looked at my MRI's and other tests and history and felt it was MS before they even did an exam.

After the exam they loaded me up with all kinds of information and sent me off with a MS diagnosis.  My PCP and the MS doctor agreed with each other.  

The two regular neuros would only tell me there was SOMETHING going on but they were not sure what.  Maybe it is a fear of commitment?


LA
Helpful - 0
429949 tn?1224691579
It's good that you have a MS specialist. There is not one near me that I have found, but I am gong to try to see one if the hematologist and Reumatologist doesn't find anything. I am tired of this wait and see aproach! It has been two years and I need to know for sure what this is. Maybe an Ms specialist will be able to read the MRI better than my  neuro. In any case it can't hurt to give it a shot, after all it seems I have seen every other specialist, so what's one more! lol!  Does the MS specialist seem to more educated in reading the MRI's? What does he do that is different than the neurologist? I know I am going to end up seeing one since my other doctors can't seem to agree!

Santana
Helpful - 0
233622 tn?1279334905
Only two that they saw lesions but there may be others that are not showing.

I have had an SER, BAER, EMG. Ton of blood tests to rule out other things.    My PCP has suspected I might have MS for a few years.  

My doctor is a well known MS specialist.  I met the criteria with out the LP .  

LA
Helpful - 0
429949 tn?1224691579
LA , So you only have two lesions altogether?  Did you have an LP? I had one and it was negative with no O banding. Did they rule other mimics out and if they did how did they test for these things?

Jensequitur, Retoubular Neuritis is just  another form of ON, but further back on the optic nerve in the visual pathways, or radiations toward the brain. There is no way to see it unless the MRI picks it up and in my case it did not show it. The problem is that both ADEM and MS have the same almost identical symptoms including ON and RN. The way all five of my MRI's look, it seems that all the lesions 10 or more happened at one time, because my neuro says they all apear to be the same age. This would go more with ADEM rather than MS. Also  ADEM is a monophasic illness, meaning one time attack with no relapes, so far this , in my case looks like ADEM. But my neuro cannot completely rule out MS, and says that it has to be monitored for some time. How long? I don't really know. I asked him if he thought that there would have been something new  on my MRI in two years if it is MS? He said he would have expected to see something new in that lenghth of time in MS, but still can't completely rule it out yet. Over the past two years I have tried to prepare myself in case it prooves to be MS, and after some of the diseases that I have been tested for and read about, MS don't look to bad anymore. Don't get me wrong I don't want to have MS, but if it does end up being that I know from all of you that I can make it through it! My 28 year old cousin died suddenely three weeks ago from a massive stroke. She wasn't even sick. It was the birth control she was on that killed her. There are so many horrible things that can happen to people, and I am not about to complain as long as I am still alive and functioning as best I can. You might say I look at life so much differentley than I did before I set out on this journey to a DX. In some ways I think I am a better person for having gone through this, and now I understand what is important in life and what is not!

Santana
Helpful - 0
233622 tn?1279334905
Well, I had an abnormal MRI showing an old lesion, new lesion, and ON. Abnormal VER.  My reflexes are brisk with clonus on one side.  I have Trigeminal nerualgia.  A history of Ms in my family.

My blood tests were all normal. Can't think of anything else right now except I have a lot of the sensory things with numbness, buzzing, weakness and blurred vision when I am too warm.  

LA
Helpful - 0
338416 tn?1420045702
Santana, you haven't been diagnosed yet?  Hmm...  

I went to the eye doctor with what I thought was an eye scratch, and she prescribed some medicated eye drops, which helped the inflammation and soreness.  The eyes got better, but the weird problems with light and color changes persisted, even after the regular doctor gave me an oral course of steroids.

According to Medscape, oral steroids do not help recovery from optic neuritis, but IV steroids do.   Those that have taken oral steroids are more likely to have another flareup of ON.

Retrobulbar neuritis sounds more likely, if you haven't had another occurence in two years.
Helpful - 0
429949 tn?1224691579
Hi, thanks for responding. If you don't mind my asking, what was your test results? MRI's, EP, ect. How long did it take you to get you DX and was there any other possibilities that they had to rule out?

Santana
Helpful - 0
233622 tn?1279334905
I hope you find out what is going on soon!  How frustrating for you.

Yes, i was dx'd in February.  I took my 8th injection of Avonex this past Friday.  

LA
Helpful - 0
429949 tn?1224691579
I don't have the flashes of light anymore, that was in the first three to four week after onset. I have seen 2 neuro's and one neuro-opthalmologist. The first neuro said MS, but had not done any testing except for a MRI without contrast and a VEP. He didn't do any blood test or an LP, and dx MS and sent me out of the office with a bag full of Rebiff. Second Neuro and still my doctor done MRI with and without contrast, blood work, and an LP, the LP was negative. He is the one who is doing the repeat scans every six months. He says ADEM, but is monitoring for MS, and no meds. The neuro- opthalmologist thinks it is MS. The radiologist at first thought I might have PML which is fatal in less than a year, but my neuro ruled it out with a polyomerce chain reaction test done on spinal fluid. My neuro told me I didn't  have PML even before the LP was done and he was right.  Since all of my repeat MRI's over the last two years have came back with no new lesions and no  change my neuro is leaning more toward ADEM but says it has to be monitored for a long period of time.I have also seen a hearing specialist, all test negative, a dermatologist, all negative I see an opthalmologist every six months, eyes have remained normal with 20/25 VA. This last week I went to a hematologist to make sure I don't have clotting problems, but the test won't be back until May 7th. My next stop is to a Reumatologist to rule out Sjogren's and other things. I haven't seen an MS specialist yet because the nearest one to me is a four or five hour drive. If these other doctors cannot figure this out then that is my next stop!

I hope you recover soon from your ON! Vision loss is no fun for sure and I totally understand everything you are going through. Are you DX yet?

Santana
Helpful - 0
233622 tn?1279334905
You do have a lot going on.  I also had flashes of lights. The flashes of lights were getting better after I started to improve from my first bout of ON.

This second round has not been as intense for me.  I still have some flashes of lights but they are more like seeing stars of I move too quickly or look off to the side.  

The lights I had before were like flashes of lightning.  I was not treated either time with steroids.  Both times it seems like it has taken about 4-5 weeks before I start to improve.

Have you seen a MS specialist yet?  I think I would if I were you.


LA
Helpful - 0
429949 tn?1224691579
My episode has been one long one. The vision distortion came on suddenely while standing in a store. Over the next couple of weeks photopobia(light sensitivity) was added to the distorted vision. There was no pain in my eyes at onset infact both my eyes became completely numb within three weeks into it. Then came the flashing and flickering lights, as if there were thousands of lights being turned off and on very rapidly. Then in a couple more weeks my vision went completely dimmed, almost looked like everything was in black and white. Then after a couple of weeks of this my vision became blured like a viel was over my field of vision. After  this came the pressure in my eyes, face, and head. This is about the point where the pain started in both eyes. It was deep boring pain, deep in the sockets. The opthalmologist said my fundiscopic exam was completely normal except for some surface problems on my eyelids and in my eyes. He said I had Blepharitis( inflamation of the eyelids, and meibomian gland disfunction, and dry eye. I never had any of these conditions prior to this attack, and they are all chronic conditions. They are however possible side effects of the medication I was switched to six weeks prior to the onset, Paroxetine(generic Paxil), and so is meningitis, and optic neuritis and peripheral neuritis.My VA was 20/20 and is now 20/25. My optic nerves and retina was and still is normal. They finally done a visual field test that showed an inferior harmoneous quadrant defect on the left. This led to the MRI which showed about 10 white matter lesions. My spinal tap was negative with no O banding, and all blood work came back normal. VEP was abnormal showing slowing. I have been dx with ADEM, acute dissiminated encephalomyelitis which is inflamation of the brain and or spinal cord. It is hard to distinguish from MS in the acute stage. This is why I have had MRI's every six months for the last two years. They have showed no change in the lesions, no enhancement, and no new lesions. My neuro- opthalmologist said that If I did have ON that it was further back in the visual pathway towards the brain and this  type is called Retoubular Neuritis. The weird thing that I have noticed is that most of the people who I have heard on the forum discribe ON, doesn't sound like the symptoms I had at onset. There seems to be a lot of differences both in presentation and course. I don't know if this is because I didn't receive any treatment or why this is. Also a lot of them seem to have had replapes of ON and so far I have not. Mine seems to be one attack with a slow steady improvement over two years. I wonder if these difference mean something or are clues to a differental dx? I don't know and the doctors don't seem to care after two years. But I would like to know what happened to me that day that started all of this. I don't know if I will ever find that answer though, but I still keep trying to figure out what it is!

Santana
Helpful - 0
233622 tn?1279334905
My ON started with pain behind my eye and then blurred vision.

With the first episoide I had the eye doctor ordered an MRI and that was positive for ON.  My vision field and eye exam all pointed towards ON also.

The second round of ON started with pain again and my vision started to get worse.  This time the eye doctor could see pallor.

I was sent for another MRI which confirmed yet another bout of ON.

There was over 8 months between my first and second episiode of ON.

I am not sure if this answers your questions or not.....

LA
Helpful - 0
Avatar universal
Isnt it funny how doctors all have different views.  I developed ON about 4 weeks ago.  He told me it was considered a disease of "the doctor sees nothing and the patient sees nothing" and this is the basis for the diagnosis.  I did some other tests that may have backed it up and I experience a great improvement after 3 days of IV steroids and then started a six week tapering dose of oral steroids.  I was just removed from them due to some side effects and this concerns me as my vision is not back to 100%.  

The opthamologist said it could take up to six months to notice what damage to the optic nerve is permanent.  He stressed the importance of not waiting to get treatement.  It happened to me on a Friday evening, came on all of a sudden, I thought I was having an aura and was going to have a seizure.  When it did not resolve by Monday I called my PCP that was out of town and then waited until Wednesday to go to Urgent Care.  It was stressed to me that it was very important to not delay treatment, if this was to happen again, as it could cause irreversible damage to optic nerve due to the pressure/inflammation.

I am still in limbo land and have not been diagnosed or not what is going on.  Although the opthalmolgis, when I went back for my follow-up, was very surprised I had not been started on meds.  He said ON is a presenting/very common symptom of MS.
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Avatar universal
I HAVE HAD SEVERAL BOUTS OF OPTICAL NEURITIS IN THE PAST YEAR.I HAVE HAD IV STEROIDS FOR IT.

THE STEROIDS HELP WITH THE INFLAMATION OF NERVES,BUT IT CAN TAKE SOMETIME MONTHS FOR THE VISION TO RETURN TO NORMAL.

ITS LIKE A 50-50 CHANCE OF THE ROIDS WORKING.

T-LYNN
Helpful - 0
429949 tn?1224691579
My fundiscopic exam has been normal from the start, showing normal optic nerves. I don't have any proof that I had ON, except for the fact that I had every single symptom. My neuro- opthalmologist said that if I did have it that it was probally further back  in the visual pathway toward the brain( Retoubular Neuritis), which  another form of ON with the same symptoms. It is just back in the optic radiations I think. Did you have any surface eye conditions with it like dry eye, meibomian gland dysfunction, or blepharitis? I had all of these and they are all chronic conditions. And the last question, did you have light sensitivity, flashes and flickering  and distorted vision at the onset? I am sorry to ask so many questions, but I had all of these things and I am not sure that ON was really what was going on with me since my optic nerve,  what they could see with fundiscopic exam,
was normal. I also fit the symptoms for retinal detatchment but my retina's look normal too! All of these symptoms  could have just been from the white matter lesions in the brain, I don't know and my doctors don't seem to know for sure either.

Santana
Helpful - 0
233622 tn?1279334905
Sanatana,
With both bouts of ON recovery has been gradual.  Some days my vision is better than others.  It depends on if I am tired or if it is warmer and humid outside.  

My vision had not returned completely to normal before the second round of ON.  I didn't have treatment with either episode.

Hopefully I will be able to answer your last question at some point but I have not had total healing yet.  I do hope that happens but with ON in the same eye so close together I do wonder.  

I do have optic nerve pallor so I am not sure if I will heal totally or not.  I understand pallor is nerve damage.  :(

LA

Helpful - 0
429949 tn?1224691579
I did read that the steriods did help hold off the progression for I think it was two years, but after that it seemed to have no effect. I guess what I was really wondering was how did your vision recover. Did it gradually slip back towards normal. In your first bout the one with no treatment, did it completely recover before the second attack hit or was the healing only partial? And also could you see the improvement  going back and forth with the disfunction before it totally healed?

Santana
Helpful - 0
233622 tn?1279334905
Hello,
I started my first bout of ON last May 2007.  That is what started this MS ball rolling.  I had no treatment and my eye sight started to recover.  

January 2008 I had another bout of ON.  This time my vision was worse and that sent me to an MS clinic and I recieved a DX of MS.

My vision is starting to improve again.  Hopefully this is the last of the ON for me.  I am not sure but I am hoping the Avonex will help keep my eyes calm and healthy.

My understanding is that the steroids do not affect the outcome of healing for ON but it can speed the healing process up.

The other thing I understood about steroid treatment is that is can hold off the development of MS or totally prevent MS from ever developing. BUT I am not a medical professional and do not totally understand it all.


LA
Helpful - 0
429949 tn?1224691579
Thanks for the information. I have read about the long term study, but never found the information that said how long the recovery could go on for. Over the two years I have seen a steady improvement in increments of about 3 weeks. I am now at the point where hours will pass by without me noticing that the vision cut is there. Before it was impossible to ignore as it seemed to be blocking my entire vision field. It seems like it is slowly trying to slip closer and closer to normal,(that is if I can remember what normal looks like). I can actually see it going back and forth almost like some sort of an adjusting going on . Like I will see the cut in vision and see it trying to merge together and then split apart again. It is so weird to see this. Hopefully this means that my brain is trying to correct the problem slowly over time. Do you think this may be what is happening?
Santana
Helpful - 0
476834 tn?1228398709
Hi Quix,

would you mind please reading my post?  I've noticed you have alot of experience with MRI'S  and ms can you help me understand mine?  Quix i'm scared.  You see i have a daughter in a wheelchair.  she was in a tramatic car accident 4 years ago and is paralyzed from her chest down.  I am her 24/7 caregiver and it scares me that I might have ms.  I just TRY and stay positive but sometimes it gets me down.

Thank you for your time

Ray911
Helpful - 0
147426 tn?1317265632
I can't speak from personal experience, but a large (huge) longterm study showed that use of steroids did not ultimately affect the healing.  The outcome was the same with or without treatment.  Recovery may continue to occur over years.

Quix
Helpful - 0
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