Running a multiple sclerosis page on Facebook (please feel free to join us at https://www.facebook.com/MultipleSclerosisTalk) we have noticed that many of our readers feel that Optic Neuritis was one of the first symptoms of the condition they noticed. And that optic neuritis is one of the most concerning symptoms.
For example a recent posted shared
“I have optic neuritis and 3 demyelating lesions but they are no longer bright on the MRI…symptoms however are progressing, numbness, balance vision etc. it’s frustrating to not be certain anymore, the neuro had been certain for two years”.
The purpose of this blog is to allow our readers to share their experience of optic neuritis and multiple sclerosis.
But first it may be useful to offer a brief definition of optic neuritis. Very simply optic neuritis is the inflammation of the optic nerve. This can lead to either partial or complete sight loss. It is most commonly seen as a symptom of multiple sclerosis with 50% of diagnosed people with multiple sclerosis reporting optic neuritis at some time. Importantly for around 20% of MS patients it is the first symptom.
While multiple sclerosis is the most common cause of optic neuritis it is worth bearing in mind that it is not the only cause. Diabetes, infections such as syphilis and autoimmune conditions can also lead to optic neuritis.
We are very keen to hear about your experiences of optic neuritis. Everything you would like to share if of great interest but you might like to consider the following questions?
- Do you suffer from optic neuritis? How long have you had it?
- Was it the first sign or symptom of multiple sclerosis?
- What affect has optic neuritis had on your lifestyle?
- Did you use any treatments and to what extent did they work for you?
- It has been suggested that having your first symptom as optic neuritis means that your multiple sclerosis is more “benign”. Is this true for you?
- Have you any advice you would like to give a person who has just found out they have optic neuritis or multiple sclerosis?
Please feel free to add anything of interest in the comment boxes below. If you have any links you think may be of interest to our readers please feel free to share.
Thanks very much in advance
You should definitely be referred to a neurologist and have an mri. When I had optic neuritis my optometrist referred me immediately to eye specialist who told me it was highly likely an early sign of ms. I was given an MRI straight away and then referred to a neurologist. A neurologist is the best qualified to determine if it’s ms or not based on MRI and other information. I’d be getting another opinion if I were you. All the best.
I had optic neuritis 12 years ago in one eye, with a strong dose of steroids I was able to get my vision back. MRI scans showed a few leasions but my doctors not keen to say yes to ms. A week ago I developed blurry, double vision. Was told nothing they could do, vision would come back by itself in 3-6 months. There is no talk of getting another MRI since my eye specialist doesn’t think it’s linked. I’m feeling very uneasy, my dad has ms and when I read all the vision problems people have leading up to diagnosis, I’m concerned they aren’t taking this serious.
For me, Optic neuritis was the concluding sign that I had RRMS. I was diagnosed at 20 and I am now almost 28. The first way thay they chose to treat it was that I went ibto outpatient services at a hospital 5 days in a row to ger hooked up to an IV of Solumedrol. I never noticed results immediately but within the few days after I had finished my outpatient visits I slowly started to regain some of the vision back. This first bout it was in my right eye. I unfortunately had other relapses where ootic neuritis was the main issue during the relapse and it had actually happened in my left eye . All i know is that I am very thankful it has never been in both eyes at once. My vision is not 20/20 anymore but i have gotten almost all of it back. Now these days I am struggling with a new symptom, my biggest fear, my mobility. I randomly (like we all know how thid is do unpredictable ) get drop-foot, where I cannot lift my right foot off of the ground to walk properly. So I’m not positive that just because the first symptom was optic neuritis thst it would mean its a milder case..i only say that because I feel with my mobility now being compromised that it has become more aggressive and thus new lesions.
But, the good part of having this type of MS is that there are soooo many days where I go forgetting I even have it. I don’t define myself by having this disease and stay as positive as I can. Best advice: KEEP MOVING. DON’T LET IT CONSUME YOUR LIFE. EVERYDAY Is A NEW DAY. 😀 wish everyone the best!
Hi ive been diagnosed with optic nuritis. The first time was on my right eye it started with headache on my right side then itwas pain on the movement of the eye and then its went to floaters in my eye then to partically loss of sight then the next day was the the full eye sight it was black when i woked … So. I went to the hospital i was treated with steriods.. For aweek then i was discharged …was on oral steroids Then 3 weeks later my other eye (left) recall and the same symptoms… Went bavk to the hospital. So ow they have my on the same steroids for a month and im just now starting to feel the same symtoms again… I dont know exactly how many time can my eyes recall or y is this even happeneing
Looking back with what I know now, Optic neuritis was not my first symptom, but was what finally got drs to stop guessing and seriously test me. Believe it or not, unexplained itching for over 10 years was my 1st symptom. Stumbling around, weakness, urinary issues, all that I never put it together or even mentioned to drs.The dx of MS was actually a relief. Finally, we know what we are fighting and can get information and support instead of more unanswered questions. I chose not to medicate yet, due to side effects, but I have knowledge, research and control over my treatment. I still have ON flare ups and need 3 days of steroid infusions about every 6 months, but that’s better than the daily dose of meds that create more issues. Weakness, clumsey, “hug”, urinary issues, etc all are explained now and are just part of me being me. I have researched and accepted this, so fear and ignorance will not control me. I am happier now than when I didn’t know what was going on. Good luck and God bless.
I was first diagnosed with MS 6 years ago based on a severe case of optic neuritis…no other symptoms thankfully. It took about 4 months to cleat and I do notice some lingering affects but nothing that adversely impacts my daily life. I have been taking Betaseron since my diagnosis…the only side effect that I have ever had was flu like symptoms. Easily controlled by taking 2 ibuprofen at the time of my injection, and taking the injection before bed so that I can sleep through it. It is working great for me!!! Good luck and remember MS is just a diagnosis it does not define who you are.
I HAVE MS RR DIAGNOTICS AROUND 12 YEARS,,BUT MY NEUROSIS OPTIC HAVE FOR 28 YEARS,,,Y DONT SEE MORE INTHE NIGHT ,THE LIGHTS CAUSE PAIN HEAD,,,IN THE DAY DONT PRECISION POINT,MY EYES IN THIS MORNING IS RED AND INFLAMATE,,WORK OR READ IS NOMORE IMPOSSIBLE AROUND FOR 5 HRS.
I was dx w/ RRMS in ’91, which has now progressed to SPMS. I used Avonex from Oct. ’04 until April ’06. I then switched to Copaxone, which I used until Oct. ’07. I had not seen any benefits from either of them. At that time I had heard some good things about Tysabri, and decided (after much prayer and online research) to change neurologists. I started Tysabri in Jan. ’08. After probably eight or nine months I gradually began to see improvements in my energy levels, balance, less slurred speech, and (best of all for a middle-aged woman) better bladder control. Annual JC Virus blood tests have not seen any exposure to it, which might lead to a miniscule rise in the possibility of my developing PML. I strongly suggest you discuss Tysabri with your neuro, and think about the possibility of using Tysabri.
At the start of June this year my vision in left eye went blurry overnight. I also had pain when moving my eye. Saw my doctor who referred me to opthomologist straight away. Opthomologist diagnosed optic neuritis and ordered MRI of brain and orbit, which confirmed his diagnosis (only one brain lesion which was from optic neuritis). It’s now September and my vision has improved slightly but slowly. Am seeing neurologist who ordered a tonne of blood tests,chest X-ray and MRI of spine, all came back clear. He then did evoked response potential which confirmed a deficit in my left eye. Had a lumbar puncture a couple of weeks ago and will see my neurologist at end of September to get results ( I’m too scared to call before). I am 45 and have not had any other symptoms before this. Neurologist said he wants to discuss medicating me (even though he hasn’t given me definitive diagnosis of MS). Avonex, Copaxone,Rebif and Betaferon were the drugs he was considering. I’ve researched blogs etc on them and they all sound like they have some awful side effects. Anyone else on these?
Inflammation of the optic nerve was my mum’s first ms symptom. Her eyes couldnt focus and her eyesight deteriorated. However after around a year her eyesight improved.
Do you suffer from optic neuritis? How long have you had it? No
Was it the first sign or symptom of multiple sclerosis? numbness tingling in L leg and hand
What affect has optic neuritis had on your lifestyle? n/a
Did you use any treatments and to what extent did they work for you?n/aIt has been suggested that having your first symptom as optic
neuritis means that your multiple sclerosis is more “benign”. Is this
true for you?n/sHave you any advice you would like to give a person who has just found out they have optic neuritis or multiple sclerosis?n/a
August 22, 2002-I was 21 years old and living in my first apartment with my boyfriend. For a month or longer I had been complaining of extreme fatigue at work. That morning, I woke up with almost no vision in my right eye. It may be worthwhile to not that exactly one month period to this, I had my MMR vaccination for college that I would be starting in 4 days from this incident. I was put on IV solu-medrol within 24 hours. I was referred to an optic neurologist & I regained a small amount of my sight back but never fully gained function again.
Over the course of the next few months (August-December), I had monthly mri’s (all negative), and 2 spinal taps (both positive). Although I regained some vision, it took a long time to do so. I would say at least a year or more.
January 30, 2003- I had another mri, this time showing a large ring enhanced lesion on my occipital lobe. Radiologist reports that this was not typical of an MS lesion, but most likely a malignant brain tumor. I was referred to Strong Memorial Hospital, where they confirmed 2 on my suspicions; 1-our local radiologists are idiots, and 2-I have MS (its not a tumor!)
I have had my share of struggles with this disease, but overall I have been very lucky. Since my first symptom of optic neuritis, I have gone on to complete LPN school (much later and a different program than originally planned, but I like unpredictability), have had 3 wonderful kids, and held not only a full time job, but for many years, a part time or perdiem job as well.
The best advice I can give is to not give up on yourself. Learn to live with it and most importantly, learn to love life again.YOU are your own worst enemy, don’t be.staying positive is hard, but I force it. I still have bad days but I don’t let it change my world.
This was the first sign of MS which loss sight in left eye, lasted 3 months, 16 years later after many other episodes I was dianosis with MS in 2009
Thanks for your reply.
I think sometimes I should get tested, but with any symptoms I have being so mild and rare, I’m not sure if anything would show. If thinks progress at any point I will finally get some testing done.
I’m so sorry about your loss.
I have had two miscarriages and two still born babies and one surviving twin of one of my pregnancies. My daughter is a young adult now and I cant imagine what you are going through.
You are right, with other life events that we all have, MS cant hold a candle to the sorrows we have been dealt.
I wish you well.
I don’t know what “typical” ms is, and with ms, I don’t think there is any such thing.
I am very fortunate as well… I’ve had 2 bouts of optic neuritis, in 12 years, but they have been much milder than when people report blindness. My optic neuritis has only been blurry, foggy vision with a dark area lasting for a couple of months after the solumedrol drip. The headaches that precedes & accompanies the ON have been so severe as to cause vomiting… no fun!
My first symptoms at age 24ish were severe headaches, numbness, tingling, pins & needles which all went undiagnosed by docs until I was 54, just this past September 2014. I have other symptoms, however, and comparatively, they are milder as well; since this current, 7 month long flare up, I also continue to experience ms hugs, ms fatigue, ms insomnia, dizziness, much, much intermittent & “diffused” pain which means it’s every where for no apparent reason other than ms. The pain has caused me to need a cane from time to time…no fun!
I consider my self very fortunate in that the symptoms are tolerable enough that I can walk/jog up to 6 miles most mornings & work full time. MS hurts like crazy some days and some days I skip work & social events due to the severity of issues.
There are worse things in life… I too have lost a child to death – a young-adult child – and because of her death, I lost my grandson & son-in law because… well life changed. But Pam, since we continue breathing even through & with that child-loss grief, comparatively, ms is a cake-walk in the park.
We are blessed with every breath.
I had optic neuritis in my late 20’s. Went completely blind for about 4 days. After I had extreme numbness in my trunk and hands. Hands were so bad I couldn’t feel anything. Shortly after I became pregnant so I never had the testing for my suspected MS. I miscarried at 12 weeks, my symptoms subsided and I never had the tests done.
I have had some minor symptoms through out the years, I’m 51 now, but nothing major.
Am I alone with how my symptoms became atypical? I always wonder if I do in fact have MS, but I don’t know if anything (lesions etc.) would even show after all these years. I am told at the eye doctor they can tell I had optic neuritis but I have very little scare tissue? from the occurrence.
I often think if I do have MS that I am extremely fortunate.
Thanks for any thoughts
I have MS & I do suffer from optic neuritis on occasion (3-5 episodes in the last 4 years). It was not the 1st sign of MS for me … headaches, dizziness & walking problems were. Optic Neuritis has affected my lifestyle in that I need reading glasses. I also need to keep myself in the air conditioning & avoid stress. I would advise anyone recently diagnosed with MS &/or optic neuritis this: “Congratulations, the hardest part is getting a diagnosis. Have faith & find a doctor you can trust.!”
am at the moment suffering from optic neuritis ,this being my third episode ,on neither occasions have I had any medication and the problem cleared up itself after aprox a month this particular episode is on it’s third week with no sign yet of it clearing ,I have been diagnosed with RRM MS for 13yrs and I am 51 yrs old ,I find this particular part of ms ,frustrating ,annoying and down right depressing ,blurred vision ,blind spots and eye discomfort being the main symptoms ,sometimes disorientation plays a part and of course fear ……. Apart from that I’m fine !!!
KixPeace I love you girl… this is me you are describing… yes the cannabis is what helped me.. in a chair for 6 years because of M.S. they said I would never walk again… I now walk (y) , hardly take any hydrocodone and no Xanax or anything for panic attacks…
peeldeen They Doc told me I was to lazy to work, had full time job 40 + hours and was attending technical school… I was by far lazy… for 20 years this went on, till i could no longer walk, or stay awake.. was I lazy no, at this point my husband and I owned a restaurant, so I still don’t think I was lazy… the Doc said it was all in my head.. went to a Specialist at Cleveland Clinic in Ohio, had my answer in 15 minutes from that Doc, he was going strong for M.S., on to MRI.. with an hour I was being told in the MRI, while they did they scan… about my M.S. it was confirmed… get a second opinion… you know what is wrong… in your heart you do, I did… please get to a Specialist as soon as possible… and God Bless my friend.. you have described my life with M.S. to a “T’, this is my exact story…
This was my husband’s “calling card” as I refer to it. A shout out from the disease to get his attention once and for all. After 7 years of numbness and pins and needles in his hands, feet and groin being ignored and going unchecked he finally went blind in one eye out of the blue one day, that was in 2000. Went to an eye doc who said it could possibly be MS. The blindness lasted about 6 weeks. He still ignored it until other symptoms started to pop up in 2009. FINALLY went to a neurologist and was diagnosed a few weeks later.https://www.facebook.com/# · https://www.facebook.com/# · https://www.facebook.com/MultipleSclerosisTalk/posts/10202720713473114?comment_id=63634668&offset=0&total_comments=7
I had optic neuritis as an on set. Well the one that finally got me to get tested for MS. It was really scary actually.
It was Cinco D mayo 4 yrs ago and I thought I was really drunk but didn’t drink anything yet. All I could see was Double & triples. It was so freaky! I had to pick up my boyfriend at the time and tried to drive. Thank god it was only a few blocks down cause I got to him and couldn’t even explain it to him. It was horrible. Still happens ever so often but has decreased as the yrs have gone by.
My tip would be is to not drive!
Bad idea! Lol