130 thoughts on “Optic Neuritis – An early sign of multiple sclerosis? Share your optic neuritis story here!”

1. 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.

2. 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.

3. 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!
   -Jennie

4. 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

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6. 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.

7. 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.

8. 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.

9. I

10. Hi AussieKylie,
       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.

11. 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?

12. 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.

13. 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

14. 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.

15. 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

16. 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.

17. PamBlas  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.

18. Hi 🙂
    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

19. 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.!”

20. This is what got my diagnosis 2 years ago. I recovered a bit but not fully and still struggle to see clearly – especially when tired

21. I 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 !!!

22. 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…

23. 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…

24. 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

25. 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

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27. peeldeen I hope you can find some answers soon, on that note may I suggest you  do a bit of research on Lyme disease, CPN and various other things. The thing is we as humans can sometimes fight off a chronic disease just fine as our immune systems are good but if there is trauma it can sometimes allow the chronic condition to come forth. I was similar to you  in that all tests were negative for the first 4 years for MS and then I was crazy because there was nothing wrong. As it turns our eventually I got the dreaded MS diagnoses only to find out 14 years later they got it wrong and failed me several times, so now I have Chronic Lyme with MS symptoms due to not getting the proper treatment early enough. Maybe try to find a good Naturapath or a biological doctor and maybe do some research on the two conditions written above, good luck

    • buggspeeldeen 
      thanks for your advice 🙂 i will

28. i hope i will get help here. before 1 month i got a hit of cork while playing badminton in my left eye. it was very painful to move the eye and everything was blurry and very dim sight. i went to an optometrist and he didn’t give me an MRI. he said that an inflammation happened and gave me medicine for 10 days. within 10 days my sight appeared almost 20/20 but my colour and contrast remained unchanged. i got an headache in my left side and in 4-10 degree cel cold i feel nostril tingle with little uncomfort and slight pain in my left head. when i try to watch movies or work in screen [ i’m a graphics specialist :(… i have to work a lot in high res screen for a long time. ] i get headache in my left part of head[ i never got a headache in my head in 26 years age so i don’t know what is headache… i feel uncomfortable and extra weight in left part and gradually it moves to right part. after 1 hours of working in screen my right eye gets full of water but affected eye remains dry and felt little detached] i didn’t have MS ever. but the doctor says there is no relation of headache with my problem cuz i don’t have any MS signs like feeling concussions or vomiting or instability. even i clearly get motion perceptions. but recently im forgetting word spellings too much and can’t think deeply cuz my head get extra weight. but the doctor tells it just a psychological fear of mine. so he gave me brain relieving tablets. but the things are still happening i want to work like past in screen. it’s my only happiness to live in the earth. i don’t want anything else. need good advise

    • Dplankers thanks. actually when something doesn’t have sure cure that breaks the heart too severely. i was born for design. can’t just think i will not be able to make new designs, new colours. my eyes will be tired ! i will be a puppet of new normals. but i have only a peace in my heart . may be the earth has a balance for  happiness and pain. may be my end of dreams will let someone not crying 🙂

29. Do you suffer from optic neuritis?  When I was first dx How long have you had it? I only had Optic neuritis for a couple of weeks then solumedrul Was it the first sign or symptom of multiple sclerosis? YesWhat affect has optic neuritis had on your lifestyle? Only that first two weeksDid you use any treatments and to what extent did they work for you? I  was started on copaxone and had severe side effects later got on Tysabri and have had great sucessIt has been suggested that having your first symptom as optic neuritis means that your multiple sclerosis is more “benign”.  Is this true for you?I cannot speak to that however I have RRMSHave you any advice you would like to give a person who has just found out they have optic neuritis or multiple sclerosis? Be as positive as possible and get the meds that work for you. Stay away from stress and stay out of the heat.

30. Do you suffer from optic neuritis?  i suffer much with this symptom. How long have you had it? i have actually had it off and on for twenty years.  they misdiagnosed me with glaucoma for many years.Was it the first sign or symptom of multiple sclerosis? yesWhat affect has optic neuritis had on your lifestyle? i am legally blind anyway from congenital cataracts, so after i adapted to it, i learned to compensate for it.Did you use any treatments and to what extent did they work for you? i use copaxone every day and they were treating it with high doses of steroids, but lately the steroids are having a very bad effect on me.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? not even in the least.  i used to think that, but then within two years i had a plethera of numerous other symptoms Have you any advice you would like to give a person who has just found out they have optic neuritis or multiple sclerosis do not let them misdiagnose you with glaucoma.  the drops i had to take burned like fire, and it did not fix what i really had optic neuritis.

31. iI have Optic neuritis since 2006, But I have had MS since 1982 if not before that. My Optic neuritis has left me blind in the right eye and i was scared at first to get back in the car to drive again but then i thought  lots of folks drive with one eye so i can to  and i do. Having MS sucks but I learn all I can to help keep my MS at bay, i eat a very good diet i walk most day even if i need to use my walking canes   i talk to people about my MS I invite them to ask me questions

32. I was diagnosed in 1997. Optic neuritis has been a recurring problem for me. Double vision drives me nuts!!!  I had no choice but to only wear glasses.  One doc came up with the bright Idea to wear contacts AND glasses with prism lenses-ummm, no thanks!  Great way to suck extra cash from my pocket!1

33. when I was 22 I had a lot of pain in my left eye. It was like a dull ache so I went to the eye infirmary and after tests they said just to take painkillers so I did and it eased eventually. 6 years later I had double vision in the same eye so I was sent for evoked potential tests. Then when I was 50 I went to bed with tingling around my mouth. When I got up in the morning my eye and mouth had dropped. We  rushed straight to hospital thinking it was a stroke but was that told it was bells palsy. I was on steroids and after about 3 weeks thankfully my face went back to normal. I was having all other sorts of pains and strange feelings around my body so I pushed my doc to send me to a specialist. After an MRI scan and a lumbar puncture it was confirmed that I had MS. After talking to my doctor apparently in the report back when I had the double vision it stated that I could have early signs of MS. I was shocked to think that this had happened but after thinking about it I suppose it was a relief as if I had known I would have worried about it all those years in between .I still get pain on and off in my eyes so my MS nurse told me to take ibubrofen when it flares up.

34. I had a darkness closing in before a migraine headache when I was 26. I was sitting outside when my spouse was mowing the yard. Later I found out I was allergic to grass. I wrote it off thinking it was my allergies. Years later it happened again when I was driving I had complete blindness for 2- 3 minutes. Thank goodness I was able to stop where I was. Later came the swellings in my right hand after my hand was over tired from cleaning new homes. I was told at that time they had not out ruled MS. I thought they were nuts. I really was mad because I thought for sure it was arthritis!!

35. I woke up 6 days before my 29th birthday and my right eye was blurry the next say the top half was dark gray so I went to the eye doctor who ran a bunch of tests then said I had to get an mri went to another doctor said my brain was swollen I had acute optic nueritis and multiple lesions on my brain sent me straight to hospital for 3 days of an iv of steroids this was oct 29 2011 I have issues with my eye almost every day it feels like there is something on/in it and no matter how much I rub it does nothing. I can’t drive at night bc of the lights fragmenting and my peripheral on the right eye is almost nonexistent. I had a lumbar puncture dec 2011 and was finally diagnosed in may of 2012, I was on copaxone until medicaid stopped paying for it,I didn’t mind bc I had already decided to stop it bc it was giving me panic attacks to the point I was hyperventilating and couldn’t speak every time I got upset over the smallest thing, I had used cannabis recreationally before but now I use it medicinally and it helps all of my symptoms from my eye twitching to the painful tingling and numbness to the mood awings and insomnia. I am also prescribed to hydrocodone for pain I only take when I have to and xanax I barely take. Personally I prefer natural vitamin d, sunlight and medicinal cannabis bc I know it’s qorking my body and mind feel it. I haven’t had any iaauea since I stopped all the medications they had me on

36. Do you suffer from optic neuritis?   Yes   How long have you had it?  Just over a year now.Was it the first sign or symptom of multiple sclerosis?  NopeWhat affect has optic neuritis had on your lifestyle?  The fact that it’s really frustrating when I can’t see & of course makes me rather bitchy – of course, affects everyone around me – lol!  But I’ve always had 20/20 vision, so this is all new to me – when I lose my glasses I go into major Panic-Mode because without them I’m lost and can’t read squat ~ And considering my “life” is pretty much the Internet – it really sucks when I lose them.  When I’m tired or eyes are strained from too much reading it’s MUCH worse and my vision is so bad that just about everything is a blur.Did you use any treatments and to what extent did they work for you?  When it first began – Or when I woke up with blurred vision in one eye just over a year ago – I went into the eye dr & they sent me to my Neuro, who wouldn’t even see me, rather suggested that I go to the ER…  After 5 hours waiting in the ER – I finally told them I was having trouble breathing (which I was due to my COPD & not having my inhaler with me) they got me in, and basically let me diagnose myself (as usual!) as well as let me suggest my own treatment of the IV steroids.  After 3 days of IV steroids, it got a teeny tiny bit better, but my vision is still bad – I’ve got about 30% vision on my left eye and about 90 in the right – I also can’t see color as much in one of them (and as you can tell, I can’t remember Sh*t either – haha!)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?  Never heard of such a thing.Have you any advice you would like to give a person who has just found out they have optic neuritis or multiple sclerosis?  Listen to your body – YOU know y our body better than ANYBODY does, and don’t let doctors, neurologists or GPs, psychologists, psychiatrists, whatever…  this is YOUR body and YOU know when something is not right – don’t allow them to blow you off & leave you feeling as if you’re “wrong” about what you are feeling…  It’s not right and it’s not fair.  🙂

37. when i was finally diagnosed in 2008, i guess yes it was.  although first i was feeling very nauseous and vomiting for two days or so.  ON and numbness quickly followed.  now 5 years later, i’m very photosensitive and wearing sunglasses mostly for the past 3 months, day and night, indoors and outdoors.  its nothing like the ON, i personally think its the aging process and will be having an MRI soon.  i still maintain super excellent vision – 20:30. i’m 38.  my MS was the worst ever seen here in ireland, i presented with 40+ demyelating lesions on first MRI. i had to fight and finally got lemtrada which i think is excellent.  i’m having a great response with it after 3 years.  i believe this is due to the diet/vitamin mineral changes i made during the year between when i quit tysabri and got lemtrada on compassionate grounds, as it was still in clinical trial.  the tysabri seemed to hold it at bay -but not completely.  i was very concerned about the PML risk.  at the time my neurologist said the risk was 1/3000 but recently that has been changed (according to my data) t0 1/300. now they have closer monitoring.  my short term memory is my one remaining ongoing symptom.  there may be other factors here of course such as smoking a lot of marijuana growing up, which i had ceased when i was 30 before i was diagnosed at 33.  i am so much stronger now as a person since i was diagnosed.  it changed everything for the worse at first, but ultimately for the better.  getting ms was a slap in the face and woke me up to what is really important in life.  my advice to anyone with this news, is to be stronger than you ever thought was possible.  don’t let it get you down like you might think it will. the path has changed, but your road is long.  whatever your choice of treatment is, make it your choice.

    • I agree totally with you. Ive lost my site twice and have blurred days if i have a migraine as i have migraine disorder too. Ive just regained full sight back this week adter a migraine attack . My left eye is tge ms priblem and both eyes are affected by tge migraine it was horrid i could focus on small print and had to turn tge brighteness down on my mobile comoutor tv and wear dark glaas. MS tests you at tumes but refuse to let it control me if i cant walk i dont i do what excersis i can abd do other activitys im usely ok after them and communication through my body nerves begins to reconnect and i continue with my day. I feel like i can cope after a year of crazy symptoms its made me more determined to change my lifestyle more as i always ate well but now i eat even better with treats too as you got to live life.

38. BUENO YO YA LLEVO CON DIAGNOSTICO 12 AÑOS DE EMRR,,PERO DESDE NIÑA TENGO VISION BORRADA,,O SEA ARRASTRADA,,,ME CAIA MUCHO,,,YA ME DECIAN CORCHOLATA,,,Y ANTES DE Q ME VAYA A DAR UN BROTE LA VISION SE ME PONE FATAL,,,,

39. Do you suffer from optic neuritis?  How long have you had it?  My first occurrence was in my right eye in 2008 but the MRI didn’t show anything.  I am partially blind in that eye.  The second occurrence was in 2012 in my left eye.  I received steroids for that one and my vision has been totally restored.  I was diagnosed with that one.  In fact, there were several lesions on the MRI this time around.  Why they didn’t show up before – who knows.Was it the first sign or symptom of multiple sclerosis?  It was the first diagnosed symptom.  My whole life I have had “Neurological episodes” but of all of the MRIs (8 total only the one in 2012 and since have shown MS.  What affect has optic neuritis had on your lifestyle?  Every headache i get near my eye freaks me out.  I am an art teacher and artist so losing my sight is a great fear of mine.  My vision is fine but when i am tired it gets fuzzy.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?  i have had very few symptoms which is good – some foot and leg pain, fatigue and headaches.  I am still able to work and live quite well.Have you any advice you would like to give a person who has just found out they have optic neuritis or multiple sclerosis?  When you find out, hug someone you love and take a deep breath.  you still have the opportunity to live a long and productive life.  Work with your doctor, EXERCISE!, and eat good food.

    • Heather Hoag Hi Heather, thanks for the detailed medical history!  One thing that you said stood out in particular:  “My whole life I have had “Neurological episodes.”  Wondering if you would mind elaborating … what kind of episodes have you experienced your whole life (and by “whole life”, do you mean since childhood, since you were a teen, or since young adulthood?)  I’m curious to hear if your lifelong episodes are similar to mine (which started when I was 10 years old — I am now 48, and was just diagnosed w/ MS in Nov 2012.) Thanks for any additional info you are willing to provide!

    • PamelaMarcum Heather Hoag From 5 years old.  I crumple in the heat – easily fatigued in warm weather, prone to heat stroke and heat exhaustion, as a teen I had issues with my legs giving out at random moments and leg weakness, strange pain in my skin – like the nerves were raw, headaches my whole life long (even as a small child), I forget what it’s called when the skin on your legs and feet hurt – peripheral neuritis? – in my 20s, optic neuritis in my 30s and now diagnosed MS.  Crazy!  Hope that helps.  I am sure that I am forgetting things. They were all “little things” that my doctors ignored until the second round of optic neuritis.

    • Heather Hoag PamelaMarcum thanks for taking time to recall these details, Heather. I’m wondering if MS in children isn’t as uncommon as it is now considered to be.

    • PamelaMarcum Heather Hoag i started wearing sunglasses in class at school with permission when i was 15. i didnt like the bright daylight

40. I had ON (optic neuritis) in 2006, but that was my second major flare up; my first major flare up in 2000 was just “minor” sensory issues, gait problems, random pains, etc. But they were minor enough to send me to doctors. In both 2000 and 2006 there wasn’t enough MRI evidence or debilitating symptoms enough to conclusively warrant a M.S. diagnosis. This time, in September my mild ON led to the MRI discovery of enough lesions to finally diagnose RRMS. ON was just the first symptom for this flare up that also boasts sensory and cognitive symptoms, random pains, gait and balance issues. It’s been about 6 months now of “minor” symptoms.  I’m very able to cope with this, *with the aid of Baclofen and Gabapentin) especially now that it’s been diagnosed and i’m not just hallucinating 🙂

41. I had optic neuritis in 2009 (living in UK), my doctor at the time said that my vision would return over time. He was sure that it wasnt MS due to my age (39 at the time) but said that I could see a Neurologist to be 100% sure. I waited over a year for the Neurologist but never got to see one… my sight never returned to 100%, I now have just 40% vision in my right eye. I immigrated to Turkey in 2010 and after some more vision problems I saw an MS specialist here, he felt that it was benign and I should not be too concerned…… I was dx with MS in 2011 after I was hospitalised with numbness from my chest down to my feet and have now been on Betaseron for nearly 18 months. I always thought that the healthcare in the UK was good but I have been treated far better here in Turkey. I have tiredness, blurred vision, balance problems and aches (for which I am taking Neurontin) but so far have not had another serious relapse. I feel that if my first doctor had been more vigilant then maybe I could have started treatment earlier!!!!

42. I was DX with optic Neuritis 2 years prior to my DX of MS.  My Eye Doctor was the first doctor that said,  possible Multiple Sclerosis.  She told me it wasn’t a death sentence and that I shouldn’t worry.  I brushed it off and took the eye medication she gave me to help reduce inflammation. Two years down the road and multiple lesions later I was hospitalized from seizures on a hot spot lesion. I trust her  and will always go to her for vision care!

43. Yes Optic Neuritis in July of 95 for a month and never again. It was the symptom that got me diagnosed. Years later when I inquired about lasik  surgery I was told my optic nerves were trashed and I could never have it .

44. I started out this way too Lori…It was 3 years before I had second Optic Neuritis in same eye…then 3 more years Optic Neuritis in other eye…then, I went into full blown numbness and progression of the disease…lots of sensory issues, numbness, burning, heat related issues, cognitive issues, speech issues…if I could’ve started on one of the treatments to slow the disease back then I would’ve…if I could tell you two things to do at this point, one would be to get on one of the treatments and two would be to change your diet to be as ‘processed food free’ as possible…as natural as possible.  
    I have been through several of the treatments…I did Avonex for 6 years and had no new lesions but decided to go off of it because of the constant headaches I suffered…went to Gilenya, but changed doctors because I moved and he thought it would be better to take me off that and put me on Tysabri, which I loved…but my body created antibodies against it, so I have just started Tecfidera and have gotten past the initial side effects…I did have some stomach upset and some face flushing but all that seems to have passed, just like they said it would, now that I have been on it for 5 weeks.
    Best wishes for you as you go forward and navigate the world with your distinctive set of symptoms and your specific progression through it…mine progressed than they initially told me it would…the benign word was thrown around a lot early on, but once it started progressing, it really progressed to the point that I am on disability now.  Take the best care of yourself possible, get as much exercise as you can muster and stay as positive as you can…all those things are things it took me awhile to get to…but I wish I had done sooner!
    Linda

    • starsfan8 I was on Avonex for two years, after the initial optic neuritis, but the pain of the shot, and horrible side effects were destroying my quality of life. I promised myself that if I didn’t remain one clicical episode, and had a relapse, I would go on medication. I have been on Tecfidera since June. I have no side effects from the Tec, and I also take vitamin D and B-complex. I eat a lot of fresh fruit and vegetables, as well.

45. My first symptom was optic neuritis. One lesion was found on my optic nerve, and one in another spot of my brain. Because the two lesions were separated by space, but not time, it was still uncertain that it was actually caused by MS, for sure, until the results of the spinal tap. My vision was distorted in my left eye, and I had black spots in my right eye. I lost my depth perception, and had a sensitivity to light. I was in school, and suddenly couldn’t read, or look at a computer screen, without my eyes freaking out. I also couldn’t drive. I never had any pain, though. It has been 4 1/2 years since my initial symptoms, and diagnosis. I was one clinical episode. I went on IV steroids, and was admitted into the hospital for a week. I then had to step down from the steroids at home, which caused me severe back pain. After six months, I fully regained my vision. The optic neuritis would only affect me when I was hot or stressed. After four years, I hardly ever notice it, and then, only slightly. I am very lucky. I only had my second episode, or relapse, seven months ago. My right hand and parts of my arm went numb, and fell asleep. My MS does seem pretty “benign”. I am very lucky, for having this disease, that I am as healthy as I am.

46. I lost the sight in my eye about 6 years ago, went to hospital they done tests said it was optic neuritis, had to go back once a week for 6 weeks they said it should come back in time. It took 4 months and I have 90% of my vision back. I was diagnosed last year with MS and they said what happened to my eye was the start of MS I was in remission for 6 years.

47. I had the optic neuritis 20 years ago.  One week each eye; first one and then the other, and then the other again.  Painful when it went away.  Diagnosed with MS 10 years ago.  I’m mostly dizzy now.

48. My first documented symptom of MS was optical neuritis. I randomly went completely blind in my left eye for 2 months about 4 years ago. So, having had arthritis in my retina about 3 years prior, I made an appointment with the retina specialist I saw before as the symptoms (pain/straining in the eye socket and blindness) were the same. He checked me out and couldn’t see anything wrong with me, but secretly suspected optical neuritis and referred me to another specialist who did confirm optical neuritis. I was blind for 2 months, but opted out of the steroid treatment to speed the recovery as it would eventually clear itself up. The doctor said it was my choice, but it was better to wait as it might cause some nasty side effects (weight gain, acne, might not work at all.. The typical steroid side effects) and could ultimately cause the optical neuritis to come back.
    It has not had any real effect on my lifestyle.. My left eye is probably 90% as good as it was, but I only really notice it when I close my right eye to look out my left. Not really a big thing.
    if Optical neuritis as a first symptom has been suggested to be more of a benign case of MS… That’s good news to me. I am 28 years old and Its been 4 years since my Optical Neuritis. All things considered, I’ve had a very benign case so far. My only 2 documented flares have been the Optical Neuritis and L’hermittes (lesions on your spine that cause your whole body to vibrate when you look down and usually stop or slow down when you look up again.) I also have slightly blurry vision when I’m stressed and find that I do have mild to moderate fatigue. Nothing really all that major.. I haven’t allowed myself naps as I prefer to life my life while I still can. I know it may just be a matter of time before things do get difficult for me, so, no allowances yet. 4 years, still really positive, nothing to freak out about yet. I hope this helps!

49. My first symptoms of M.S. that sent me looking for medical attention were in 2000, but it started with mild numbness, tingling, pins and needles and headaches. I had all the tests to prove/disprove M.S. including contrasting/non-contrasting MRI. No diagnosis was offered. it took 3 years for those symptoms to be unnoticed again.    My second flare up started 3 year later with Optic Neuritis. All the same tests were run again to prove/disprove M.S. with no diagnosis. They treated me with Solu-Medrol followed by a graduating course of predinsone. I can’t remember how long it took for those symptoms to disappear as I was convinced it was the steroid’s side effects that plagued me, since they didn’t diagnose M.S.    My next flare up began about 4 months ago with “charlie horses” in my arches and calves, but the first of September I noticed the first symptoms of Optic Neuritis again and the light bulb went off. The military ophthalmologist said you DO NOT HAVE Optic Neuritis, but the main Doctor sent me to Neurology and for a non-contrasting/contrasting M.R.I. and all the other blood work, and finally they found conclusive evidence of lesions on the M.R.I. to diagnose RRMS. I just finished the full course of Solu-Medrol followed by prednisone. I’ve also had a much more severe flare up of symptoms that run the gamut from mild cognitive & speech impairment, body sensory symptoms, bowel issues… just about everything on the dirty symptom list. My next appointment with neurologist is this Wednesday where we will first discuss/decide the disease modifying treatments. 
    I’m not planning on signing on for any of the treatments and neither do I plan to use solu-medrol “next time”.

    • cmubfly I just want to let you know, I started taking Tecfidera, the new pill that just came out, and I have no side effects. I wasn’t going to go on meds, either, but I want to keep my body as healthy as it is, now. Damage from MS  can be permanent, and I want to stay as healthy as I can.

50. I had optical neuritis in 1992 when I was pregnant, I was 28 and went completely blind in one eye. I wasn’t offered any treatment and was told that my sight would come back in a few weeks. It took 6- 8 weeks to return to normal and at no time was MS mentioned (I probably wouldn’t have gone on to have more children if it was)  I was then diagnosed with MS in 2004 when I complained about my right hand feeling strange.  I started copaxone 3 weeks ago but suffer from lots of symptoms such as numb foot, leg and hand. I am still able to walk but I use a FES and a stick when out walking the dog as my right leg gets very tired very quickly now.  My MS has progressed very slowly up until 2 -3 years ago although I feel now its beginning to move much quicker hence starting the DMD.

51. I’ve been on Tysabri for more than five and a half years.  My husband and I, plus my neurologist, all feel that if not for the Tysabri, I’d be in a nursing home and the MS would be much worse.  Yes, there is some risk.  My neuro feels I have a higher chance of being struck by lightning than of developing a problem like PML.  I have a blood test every six mos. to check on that.  We all feel the benefits of Tysabri far outweigh the infinitesimal chances of me getting PML (a brain infection that is often fatal).
    Renee Drew 

52. I READ A LOT OF THIS WHEN I CAN SEE THEM BUT THAT IS [ON]I HAVE NOT HEARD OF IT. I HAVE MS, CANCER, BLEEDING DESORDER, EDS, IT WAS ALL FOUND THE SAME YEAR 2007 ONE WEEK AFTER MY MOTHER PAST. BUT I AM HAPPY AND HOME DEPOT HAS HELP ME ALOT BEEN WORKING THERE 7YRS AND LOVE MY JOB AND I AM FULL TIME. BUT WHEN I GET HOME I DONT DO ANYTHING AT ALL BECUASE I HURT. ANY WAYS I WOULD LIKE TO KNOW WHAT [ON] IS THANKS

    • ON is Optic Neuritis

53. My self Sunny Raina 28 was first diagnosed with Multiple Sclerosis
    Optic Neuritis in 2007 when I Lost my eyesight in right eye and was
    given the treatment of Methyl Prednisolene with Oral styroids. Again
    after about 3 and a hallf tears later I again suffered an acute attack
    with leissons in Spinal cord and was again treated as same when i was
    not even able to move properly. Now again after 2 years I suddenly lost
    my left eyesight vision and again treated as  earlier episodes and now I
    have been recovered upto 70% in the left eye but feeling a lot of
    problem in my daily life. In india I am not able to be treated with any
    of the disease modifying therapies because of being financially weak.

54. I noticed the large roadside sign was blurry and within 2 hours my sight was gone in my right eye. Had tests and scans and told it shut down to protect itself from overuse! It came back to perfect within 3 weeks. That was 20 years ago and last year I was diagnosed with ms. They say that the neuritis was part of it, and the first symptom

55. Does double vision count as optic neuritis?  That, I believe, was one of my earliest symptoms.  While I had it I stopped driving.  And no, for me it has not meant that ,y MS is more “benign”.  I have secondary progressive MS, but the optic neuritis has not persisted.  I didn’t have any treatments for my double vision  – that happened before my MS was formally diagnosed.

56. I woke up one morning in 2011 and my left eye felt like I had strained the muscle and my sight was blurry. I also had numbness around the ribs on my back. I went to the doc who sent me to the optician who prescribed me glasses. Got the glasses but they made no difference, my eye was still sore and blurry. Gave it about a week  then called back the optician to say glasses not helping. He set me up with an ophthalmologist who at first couldn’t find anything wrong with my eye. He eventually picked up the problem and set me up with a Neuro. Had a MRI done, found 9 lesions on my brain.I was discouraged by the opthomologist and the Neuro to take steroids as they help only temporarily and are strong drugs with quite major side effects. The vision in my eye has not returned to normal since then even though I was told it would after a few months. The pain comes and goes briefly and I have adapted to the vision loss. I have numerous other MS symptoms but gratefully none are extreme enough that I feel I need drugs yet.

57. In 1982 I had some blurriness in my right eye.  I saw my optometrist.  After examining me he said “I had a patient  who had something like this, but she had some weird nerve disease.  I don’t think you have anything like that.  I’ll have to read up on it.”  I switched to a different specialist, needless to say.  I saw an ophthalmologist,  who diagnosed optic neuritis.  It cleared up on its own.  In 1991 it returned.  I was also experiencing extreme fatigue, and some vertigo.  I was then referred to a neurologist, who diagnosed my MS.

58. I was recently diagnosed with ON (last week).  I am supposed to see a neurologist this week.   My retina specialist told me check out  Dr. Terry Walhs: Minding your Mitochondria at TADx Iowa City on You Tube.   It is very interesting.  She had severe symptoms of MS, researched several options, created a hunters/ gatherers diet, and is now symptom free – she says cured of MS.   Have any of you tried this diet for your MS symptoms??

    • JC4488 I heard of that diet from another source, and it sounds good.  My problem is, I cannot prepare my own meals, so I feel unable to follow this diet fulltime.

59. I have optic neuritis in my right eye but recently have been having blurring in my left eye… not sure if it is optic neuritis or not?…. due for a eye dr. apt

60. When I was 40 I decided to get me eyes tested for the first time in 20+ years.  I had perfect eyesight but I was conscious that I worked in front of a computer monitor all day.  Everything was fine.  However, a week later I noticed a bright light shining down from above in my left eye.  It got so annoying that I went back to the opticians.  She couldn’t find anything wrong but sent me to the Eye A&E just in case.  Within a week I had lost my eyesight completely in my left eye.  I went to see an Ophthalmologist who referred me to a Neurologist.  He said that this could be a one off so I went home and waited for my sight to come back.  I wasn’t scared or worried, I was more baffled.  I had asked the Neuro if it could go to the other eye and he said no, it was very rare that it did.  
    Within a month I started to lose my sight in my right eye, so I was whisked into hospital for 3 days of intravenous steroids and a lumber puncture.  Again I wasn’t worried as I seemed to know that my sight would come back.   I did my research on ON and it’s link with MS but was told not to worry myself, so I didn’t!  I armed myself with all the facts and waited for my body to decide it’s course.
    My sight came back and I went back to work after 3 months.  However, approximately 6 weeks later and within a matter of 4 days I lost 100% in my left eye and 50% in my right.  At this point I was referred for Disease Modifying Drugs and was given a confirmed diagnosis of MS. 
    I have been lucky in that I have not had a repeat of my Optic Neuritis, however I do still suffer with Uhthoffs phenomenon which is a daily problem, especially in warm weather, and my Optic Nerves remain damaged.  I can see though which is all that matters.   
    However, the Optic Neuritis was just the start of my MS symptoms.  As this is a disease that I have no control over I just have to deal with whatever it throws at me.  Yes, it’s hard, but I try to keep a smile on my face which gets me through life at the moment. 
    For those who have recently had ON or been diagnosed with MS all I would say is arm yourself with as much information as you can.  Get yourself a great MS Nurse.  Try not to worry about what might be, but just cope with what is.  Oh, and keep smiling 🙂

61. I am 40. I had Optic Neuritis for the first time 6yrs ago (time flies). Double vision for 6 months. I worked as an OR nurse and talk to everyone in sight! None of the docs said a thing but they obviously had their educated ideas. My eyes came back and I stopped exploring :/ I ran or did an aerobic class 5x/wk plus I worked doing what I loved as an OPEN Heart Nurse 🙂 I had an Aneurysm on my left Popiteal Venous system after having Thrombolysis for a DVT that developed after having our 3rd daughter. Women should know hypercoagutable) after pregnancy. Uterus closing up shop after having a baby. I felt the clot that did this, went immediately to the ER with my husband and 3 girls (12,8,and 2 days old) The ER doc was unable to dx because I went to the ER to fast and the clot that I felt was caught in my iliofemoral vein (May Turner disease) still undetectable to the ultrasound machine so I was sent home. Clot continued to grow and 2 days later I had Positive Homan sign and was unable to walk. Of course when I went in this time they could see the clot that went from my IVC throughout the entire deep system of my left leg! After this clot I had my eye issue but now knew not to bother try talking with a doc. They all have their own perspective and some are quite narrow! After having an EVLT 20011(after 2 yrs searching for complication rates-non to be found and docs in passing would not give up honest opionion!) After having this procedure had drop foot and unable to run. Fired as a Nurse from NYS hospital after working there for 16yrs:/ When the chips are down, no friends to be found :/ 2yrs passed or about a 1 1/2 of falling on my face before I was Dx with MS. US Medical SUCKS!!!

62. I am 22 and have not been diagnosed with MS (yet). I have had ON for 4 1/2 months now. It started with orbital pain and a loss of vision in my left eye. Steroids returned my vision and got rid of the pain, but a week afterwards the pain returned and my vision blurred again. My neurologist explained that steroids help set the ON on a milder course, but that the ON still has to run its course. Currently my vision is back to normal, I just experience occasional pain in the orbit of my left eye. What is interesting is that I went on holiday for three weeks, during which my eye did not hurt. As soon as I got back to work the pain is back. This makes me think my ON is aggravated by stress. I hope it goes away. My other eye is amblyopic so it makes me nervous having ON in my good eye.

    • Pejo1991 The old fashioned way  the doctors used to diagnose MS was if the patient experienced an extreme sensitivity to heat.  When I am in the heat, I can scarcely move and the MS symptoms increase dramatically.  I too have experienced the ON.  Word of advice, the sooner one is diagnosed with MS and medical treatment started, the greater one’s chances of staying out of the wheelchair.  Any doctor worth their salt will start treatment immediately whether or not the symptoms are severe yet or not.

63. *Do you suffer from optic neuritis?  How long have you had it?
    Even thou I was diagnosed in 2005 with MS… I had a flare up in 2007 that affected my optic nerve.  I was put on IV Steroids for 6 weeks but never got my optic situation “fixed”  I am dizzy all the time, my balance sucks, can’t seem to get my prescription on my glasses to work… I can’t recall what it feels to have a normal vision since 2007.  the past two years my doctor decided to look more into my situation and decided to tell me that I had “dancing eyes syndrome” to add to my MS.

    *Was it the first sign or symptom of multiple sclerosis?
    Numbness in my arm, dropping stuff i was holding, excessive exhaustion

    *What affect has optic neuritis had on your lifestyle?
    I can’t handle sudden movements.  Which sucks since I was a Theme Park Lover.  Those days are over because if I even dare to challenge myself to that treat… I end up sick for hours.  Driving has become a challenge and some days I just can’t do it.  Focusing to anything is an art.  Adding all that to the MS  symptoms of tiredness, pain, emotional roller coaster and challenges, 

    *Did you use any treatments and to what extent did they work for you?
    No treatment for my optic problem… Just hoping I don’t get another flare that will make it worst.

    *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?
    I was never told that.  But I have to say, that I haven’t experience another flare like that one since, My MRI has not shown new lesions…. SO….

    *Have you any advice you would like to give a person who has just found out they have optic neuritis or multiple sclerosis?
    Speak UP.  Follow up with a doctor and get your hands on it as soon as the symptoms show.  and read…. research… don’t just take what the Dr.’s say for a given.  Stay in control.

64. first i faced aproblem in my right eye in1991 then it apeared after 3moths .in1995 the same complain in the same eye then no one recognised tha i have M S but in 2008 i recognised my case now i can’t see well and some opticians rtold me my eye nerv was completely damaged and thank God that i can see any thing

65. I was told I had Optic neuritis about 5-6 years after MS diagnoses but a miracle happened, I was treated for my CCSVI condition and Optic neuritis was gone, confirmed by my opthamologist. I have not had any problems with my eyes since that was December of 2010

    • buggs I hope that your CCSVI treatment cures you forever!  I looked into it but after several scans and a couple of doctor consultations, they told me my veins were clear and straight so that is not what the issue is for me.  However, I am doing okay.  Life is okay.  When I first heard MS, I thought it was worse than a death sentence but at this point, I am used to the things that bother me and have learned to work around them, and life goes on!

    • starsfan8 buggs do you live in Canada or the US? The Clinic that tested me was trained by Dr. Zamboni, so they knew what to look for? I wish you the best of luck too and hope you have a lifetime of remission.
      So far my eyes have stayed 100%, my Opthamologist was shocked when he saw me, he said “you have no MS in your eyes?” he was as shocked as I was. Being that he is one of the only specialists that can use a definite test to determine MS I was impressed. My Neuro on the other hand uses her personal opinion not science when doing an EDSS they also go by what the patient says and they just choose whatever opinion they want. I was very happy that science confirmed that treatment for CCSVI does have benefits that are undeniable.

66. I had optic neuritis in July 2004 and was dx with MS in October 2004, so yes it was my first symptom.  I lost all visual in my left eye and it gradually returned over 11/2 years.  Is there such a thing as “benign” MS?  I see others worse than me but I wouldn’t call my MS benign.  My neurologist says I have scarring on both eyes but I was only dx in left eye.
    I haven’t had a flare in 3 yrs.!! MS is not the end of the world or even your current activty level.  Think positive and thank God for Copaxone!

67. I have ON and have had it now for 6 months. My ON is different than 95% of people because it is, unfortunately, permanent. I developed a blind spot one evening out of the blue. Years before I had been told by my eye doctor that I am prone to retinal detachment so he told me the symptoms to look for and that I need to call right away if I experienced any. I did, and I called. Long story short, I thought I was going in for eye surgery the next morning at 8am only to be told by the doctor that it was not a retinal detachment but it was ON and he ordered me to get an MRI. It was weird to be told to get an MRI by an EYE doctor. Anyway – 3 doses of IV Solumedrol and a tapering  dose of prednisone later – neither helped and my vision is permanently gone. Very rare, so I am told. I have since gotten used to having one blind eye – amazing brains we have! But I shouldn’t (but do) drive at night, and most definitely don’t drive in new situations/high-traffic cities. My depth perception is interesting, but improving. Like anything this disease throws at me – it’s my new normal.

    • lyoder7 I also have depth perception issues though my vision has returned to almost 100% after my 3 bouts with ON.  I find it especially difficult to drive during dusk/dawn or rainy/snowy conditions as that seems to really confuse my vision…and also, if for example I am looking through a screen or a window with drops of water on it, or anything like that, my eye naturally focuses on the ‘filter’ – the screen or the water drops instead of the distant yard or street beyond it.  Because of that, and the fact that I do live in a new place and I have cognitive difficulties and sometimes get lost, I don’t drive that much anymore unless my husband is with me…

68. I developed optic neuritis in December 2008. I woke up one morning, and couldn’t see straight. Went to regular eye doctors, specialty doctors, and they all told me that my eyes were fine! Then I started losing vision in my right eye. Luckily for me, I fell off my front porch one night and ended up in the ER, where they held me overnight so I could see a Neurologist first thing in the morning. After an MRI and Spinal Tap, I was diagnosed in January 2009. A dose of Solumedrol (spelling?) later, and the vision issues were gone. After a year of wrestling with relapses, I was finally put on a medication that worked for me, and I have been relapse free since!! I have actually had my MRI’s improve, which I hear is fairly uncommon. I feel as though I would fall into the “lucky” category with this one. My advice would be that even if you are diagnosed with MS or ON, it’s not the end of the world. Your world may change, but you will adapt and learn to love it and no longer take it for granted when you have “easy” days. MS=MIGHTY STRONG!!!!

69. I was diagnosed with optic nueritis by Bascom Palmer in Miami in 1999. The doctor gave no info or script for an MRI so my family and I just thought it was a fluke incident. It wasn’t until 2006 that I got bell’s palsy and was referred to a neurologist and had a spinal tap that I was diagnosed with MS. We then realized that had I received an MRI in 1999 I probably would or could have been diagnosed then. Unfortunately, the doctor that didn’t refer me to an MRI is the same doctor that actually has articles published nationally on optic neuritis being an onset of MS and the need for MRI’s after such a diagnosis…..thank you Dr. L..

70. I started with Optic Neuritis in 1996, but MS was not diagnosed.  An MRI was done, but there were no other lesions.  I was given solul medrol for a week and after months my vision returned to normal…4 to 6 months.  In 1999, I had Optic Neuritis again in the same eye and did solul medrol again. Another 3 months or so to regain vision.  Nurse mentioned MS, asked doctor and he said the problem was that there was only that one lesion.  In 2003, I had about a week of numbness in my legs, but with ongoing back issues, I thought it was my back.  I went to a chiropractor who told me I should check with the neurologist that had seen me for the Optic Neuritis as he didn’t think my back was the issue.  I called, but was too busy to go in and the numbness faded…this was May of 2003…in September the doctor’s office called me and said I really should get in for the MRI, so I went in and on a day when I felt fine, had no symptoms at all, they called me and asked me to come into the office.  The doctor told me he was pretty sure I had MS and then did the lumbar puncture, etc.  and made the diagnosis when I was fine.  I thought.  About 2 months later in November, I started losing the vision in my left eye and at that point began to have the numbness in my butt and legs…especially thighs.  I also began to have severe ankle spasms on my right side.  I did solul medrol again, and regained that vision in about 3 – 4 months.  The remaining symptoms remained.  I began to be really aware of how my vision would fade now in both eyes as I got too warm. I went on Avonex January of 2004.  Numbness continued to worsen.  In 2008 I had a relapse that suddenly caused incredible burning of my skin when I get the slightest bit warm…in fact, I get hot LONG before others, usually around 68 to 70 degrees.  Higher than that and I hurt really bad and if I keep pushing myself through, I get incredibly tired.  We were able to move from Dallas to Colorado Springs which has helped but the disease has progressed to the point that I can no longer work due to the heat issue, the cognitive issues, and most recently in the past couple of years, strength and balance issues.  I also have a curvature of the spine and incredible depression/anxiety issues that add to the disability diagnosis. I started Tysabri in January 2013…I take 2700 mg. of Neurontin a day to help keep the numbness/burning/spasms to a minimum and Cymbalta for the depression issues.

71. has anyone diagnosed with ms or on not been able to have an mri?  just curious because people such as myself with metal implants cant have an mri.  i havent been diagnosed with ms but show signs other than slurring words.  my neuro did a blood test and ct scan, which both came back negative.  but im not able walk very good, at times im hunched over and walk like an old person, i can only walk for short distances.  to stand in one spot is unbearable and now i cant stand for any longer than a minute.  every day that passes i get worse and worse and im thinking he misdiagnosed me.  i asked him to do the spinal tap test so we could be sure but he refused.

    • KJsSunset Get a different neuro.

72. I had a bout of optic neuritis about ten years ago, but it was not my first symptom of MS. I was diagnosed in 2010. My first symptom of MS occurred about five years previous to the optic neuritis and came in the form of a progressive numbness in my left leg that continues to this day. The optic neuritis, while not my first symptom, was the first symptom, of what turned out to be MS, that had me sit up and take notice. It lasted for about a month, and has never reoccurred. As a medical occurrence, I just didn’t pursue it as aggressively as I should have, which resulted in my not being diagnosed until further symptom progression in 2010.

73. Dx year ago, after several falls, than optic neuritis was diagnosed in my right eye, although I don’t seem to feel it… If anything… I have an on and off headache, primarily on my lower left side at my neck, radiates up and make me feel pressure in my left eye… wonder if this is a sign or impending problems in my right eye…. my eyes tear alot too… ?

    • Vkohrmann64 I have read that pain precedes many cases of optic neuritis.  However, before my vision went, I was sick with the worst upper respiratory infection which included runny eyes, runny nose and headache.

    • VikiG Vkohrmann64  Thankyou for your response… feel free to friend me… I get buzzes in my feet and legs, pain in my knees…. not really sure where this is all going, I try not to dwell to much… easier with the meds… I also suffer from PTSD…. but I count my blessings every day…. have been inspired to pray continuously during the day and have faith that things will all be the way they are meant to be,… Keeping the Faith. <3 🙂

74. BUT I JUST GOT OVER THIS TERRIBLE DISEASE! BY STAYING STRONGI

75. well i was dxd in 1999!  It was just cos I couldn’t walk anymore!

76. this was my partners first symptom.  He went blind in one eye in the space of one week after much persistence with the ophthalmic consultant he was sent for a MRI which lead to him being diagnosed

77. My first sign and when I had the MRI there were lots of bigger lesions but they eyesight hard to miss! First thought I had a blood clot from birth control pills!

78. Hey, RRMS sufferer since 2005.
    When I was first diagnosed it was actually the optician who noticed as I had optic neuritis at the time. It lasted a couple of weeks, the second time I had it lasted 3 weeks. My very first symptoms were optic neuritis and numbness down my  right side. I usually find when I get optic neuritis that wearing sunglasses helps a lot! Even around the house, sounds mad but it works for me 🙂 I’ve never needed specific reatments for it.
    I definitely feel that my MS is more benign, I feel very blessed, I have been in remission for 4 years and only have minor problems otherwise.
    The only advice I can give is “IF IN DOUBT, CHECK IT OUT!”
    Thanks for reading x

    • AmyHardingI
      agree totally — I was really glad that I jumped on my optic neuritis
      when I did — not so glad that it turned out to be the first sign of MS,
      but glad to know what I am dealing with.  I think the “not knowing” is
      the worst.  I totally agree with the sunglasses comment — the sun
      (outside) and the lights (inside) really bothered my eye alot and I
      ended up wearing my sunglasses around both indoors and outdoors — even
      at night, when all the lights are out and I am watching TV, sometimes,
      the light from the TV is so bright that it really bothers my eye.  Not
      sure why that is, but I am glad to hear you say it too!

    • Elaine1966 AmyHarding Hi 🙂 I can relate to your message about lights, sun, TV. Have you Flashes of light at night & dark tiny shadow spot in eyes? My eyes have tremors 24 hours as well as ALL over my body. I have a film of cloudiness over eyes & have to blink it way often. I’m an artist… Now I know I need to have an Optic Neuritis test down. I had Fibro for 23 years… the last 3 years my eyes have been doing their own thing. Chatya Gail

79. My optic neuritis showed up right before being dx’d my vision in my left eye was weird,,so i went to a regular eye dr..he tried glasses contacts all his tests,,nothing worked..sent me to an ophthalmologist who is an MS optho,did not know this at the time.he did his tests dilating the whole 9 yards in one day a long day then he tells me i need to go see a neurologist and of course i said why..he told me he was thinking MS well i kinda sorta cussed him  that was scary..so i kept that appt with the nuero he did alot of tests in the next couple days told me to come back in a week long week..but went back..and i  never heard of MS besides stars that had it..so at first my world was crushing down..but i have had optic neuritis for 8 1/2 yrs now..but i have come to learn a lot about MS and then being dx’d with type 1 diabetes 2 yrs after being dx’d with MS me i rather get rid of the diabetes,,my MS is kinda quiet  diabetes not so quiet

80. my optic neuritis showed up 4 years after i was diagnosed with MS, i woke up with very blurred vision, i was admitted to the hospital for steroid iv, then i was put into a study for on. that was in 2004, i was diagnosed with MS in 2000, to this day i still have problems with my vision, i can only see what is in front of me, and its black and white, no color, i really need to focus out of my eye to see anything..

    • i will tell you, still to this day, i am not taking any MS drugs…

    • GOOD FOR YOU MATE!!!!!!!

81. 2 weeks ago, I woke up with blurred vision in my right eye.  The eye
    doctor told me I had Optic Neuritis and sent me in for an MRI.  The MRI
    showed lesions in my white matter and I was diagnosed with MS — 6 days
    after the first symptom.  I was given a high dose of steroid initially
    and my eye is slowly getting it’s vision back.  Still can’t see out it
    fully however.  Am hoping for the best.  I am 46 years old.  I saw a
    neurologist yesterday and we are looking at a couple of drugs to start
    on — Copaxone and a new drug just approved Tecfidera.  Does anyone have
    any advise regarding either of these drugs?

    • Elaine1966 My story is identical to yours. I was diagnosed very quickly after an optic neuritis attack and MRI. I was also 46 at the time of diagnosis. I started on Copaxone 6 weeks after being diagnosed and haven’t had any problems with either the drug or MS since. My neuro may look at changing me to Tecfidera if a new MRI shows the Copaxone isn’t working as well for me as he’d like it to. The daily shots are certainly not my favorite thing in the world, but are much better than the alternative. My $ .02.

    • @halfmoonmama — well, that is very interesting isn’t it???  I am
      meeting again with my neuro in a month to discuss the options between
      Copaxone and Tecfidera.  I am leaning toward Tecfidera because it is a
      pill and because it is cheaper through my insurance than Copaxone.  But
      am glad to hear that Copaxone has worked for you.  Do you have anyone in
      your family with MS???  I do not, I am the first that I know of, but I
      do have a side of my family that have a number of autoimmune diseases
      like Lupus and RA.  But, nothing in my immediate family.  Did your eye
      return back to normal?  Mine is on its way back, but it has only been 2
      weeks.  How long did your take?

    • Elaine1966 No other family members with MS. Several with other autoimmune diseases though — diabetes, neurosarcoidosis, lupus. My eye did return to pretty near normal. My vision overall is worsening with age though… Once I began on the prednisone the vision started to improve very rapidly. I think within a month’s time it was back to where it is now. Have you had any other symptoms that you can now tie into your MS? I find myself frequently going back through my life and trying to determine if there was something else somewhere along the way that I just brushed off as something else. I was Dx in November, 2011, so all in all this is still very new for me as well.

    • halfmoonmama Elaine1966 Well, mine is “really” new as I was only diagnosed 9 days ago and have only had the optic neuritis for 16 days!  I think that is really funny that neither of us have family history of MS, but that we both have family history of “other” autoimmune diseases.  Are you, or were you, relatively healthy when this all started???  I am very healthy — the occasional hic-ups.  I had a hysterectomy a few years ago and 10 years ago I had an oblation for an electrical problem in my heart.  Otherwise, I am healthy and strong and have no other symptoms.  Should we continue this conversation by email???  my email is  lanemeyer@cal.net

    • Elaine1966 halfmoonmama Will do. My email is jinger.burton@me.com

    • Elaine1966 halfmoonmama Please keep this conversation going on the blog.  I am pretty similar to you all as well.  My mother passed away from complications from lupus and scleroderma.  My father has had RA for 40 years.  Aunt and cousin from mother’s side have lupus.  No one else in the family has MS but me which has been very benign for the past 13 years.

    • halfmoonmama Elaine1966  yes, i too have combed through my memories wondering if this or that symptom should have/could have been the first clue…  I was finally Dx’d with M.S. less than 3 weeks ago. The only relief is feeling i’m not crazy after all…

    • Elaine1966  Hi Elaine…I am 60 years old and I do have MS, 37 years…. has progressed to PRMS  Yes I have had five flare ups of Optic Neuritis, each time I do the IV steroid 500 mg for 3 to 5 day period each time.  I am taking Copaxone, 11 years now.  Before I had to retire/disability…. I began taking daily injections daily.  Then being without medical insurance I was off it for two years until I was Medicare eligible.  I seen a major decline in my health during those two years, now that I am back on it, I haven’t notice AS fast of decline these past 2 years.  As all the MS treatment drugs… it’s not a cure… only slows down the progression.  Which I am VERY thankful for.  I was on Avonex for a year… my body just didn’t agree with that med…at all!  We just have to find out which of the med’s works best with our body chemistry…. NEVER give up hope…. being positive… in my opinion… is a major ‘med’ for me!!!!  Hang in there dear… it’s a jouney we travel with the MS MonSter…. but… I keep winning the battle with it when I have the flare ups … LOL I too have some permeate vision loss… but totally thankful I can still see!!!  I well say… when taking Copaxone…. my flare ups only happen once a year maybe!  Before… I had major flare ups approximately every 3 months… Best of luck sweetie… hang in there <3

    • Elaine1966 I have had MS for 3 years and have been on Copaxone successfully.  However, I just started Tecfidera a week ago and so far so good!  None of the possible mild side effects and no more needles!  It’s very freeing to take 2 pills a day along with my other vitamins and supplements.

82. I had optical neuritis in 2002 in my left eye, a couple of years later also in my right eye. vision left about 30%, right about 60% now. It looked like the first sign of MS, but a lot of unexplainable symptoms later fell into place. I did not have treatment be ause at that time i was also depressed and my neuro at tht time said it was all in my head.
    My MS is pretty severe, so the benign part doesn’t count for me.
    I can live with the ON pretty well, the most difficult part for me is not to be able to recognise a person that is not standing close to me, people tend to think you’re ignoring them.
    My advice would be try the steroids, they might work.

83. When I was 19 I was working at a pig processing plant and about a month after I was working there my left eye got this strange hazy film over it (not to the rest of the world but thats what I saw)  I went to the occupational health doctors and they basically told me I was faking it cuz there wasn’t any disese that would cause this. I went away after a bit so I blew it off fast forward 18 years and my right hand started tingling. I blew it off as carpelle tunnel. The next year I started to not function the way I normally did. Stumbling couldn’t button shirts goofy things. Then in 2010 I quit my job. by february of 2011 I was barely able to walk went to the doctor they said I was fat and lazy and needed to work out more by May of 2011 I was in the ER cuz I couldn’t walk upstairs to use the rest room. They told me I have MS. Looking back yes optic neuritis was my first sign but I had no clue MS dithing like thisd any

    • did anything like this. stupid laptop

84. I did not find out until I was in my early 60`s,My eye doctor found it.I went on the shots for 2 years,and then was in remission for 4 years,and then this last month I started to get it back,but this time it is worse,I am so unbalanced,and so out of it,my eyes are so bad with the double vision now.
    I quit driving 3 years ago,it is so hard to go places and to see people because of not being able to see right.I will not let get me down,I can still fight this.
    I spend a lot of time on the computer,and make friends,and play games,and keep up with the news on M.S.

85. I actually have a pretty interesting story.  My 4th grade eye check up at the nurse’s office showed something weird in my right eye, so I went to an eye doc.  They diagnosed it as inflammation of my optic nerve, or literally optic neuritis.  I was only 10 though, so they weren’t really looking for it or thinking it could be the beginning of MS.  They told me I was a fat kid and it was making the pressure behind my eyes increase.  I went on meds to make the pressure go down, and that was about it.  Sure enough, 5 years later when I was a freshman in high school, the right side of my body went numb and we found MS lesions in my brain.  If only they did an MRI back when I was ten, we think MS lesions would have been found.  But oh well, everything worked out fine because here I am at 22 and have been in remission for 4 years.

86. Optic neuritis was not my first symptom and my symptoms seem to have progressed pretty rapidly over the last 5 years. The episodes seem to be much longer now while the recovery period seems to get shorter and shorter in between. It started out only lasting a few days or a week. I ignored it mostly and figured it was some strange flu since I was so tired all the time. When I finally did go it took several years of tests and the docs having no idea what was wrong with me before we came to MS as a likelihood. Through all the docs from then until now (Army family… moves a lot or gets new rotation of docs a lot), I have gone from it’s all in my head, to you need to diet and exercise, to even being drug tested by one who “swore I was going through detox”. Now my episodes are lasting anywhere from 1 to 3 months at a time and it seems I barely get that as a recovery period too. I have some symptoms I still deal with on a daily basis even in recovery. At this point I don’t take any medications except vitamins (D, b12, magnesium), and I just started those. They seem to help. I am allergic to steroids in all forms (yeah me), so that is out of the question.

87. I am still waiting on a firm dx from my neuro after a few more tests are run. I have been having symptoms since 2008. Mostly affects my right side. It started with numbness and tingling in my hands/feet and balance problems. It moved on to loss of feeling in my right hand and constant nightly muscle spasms in my right arm. It has progressed to the same symptoms in my right leg and difficulty walking. It wasn’t until this year that I had symptoms related to optic neuritis, though. I have had a dull ache in my right eye, and reduced ability to see colors correctly. I also have problems with seeing the television or computer screen and even reading. It doesn’t seem like it is all the time, though. Sometimes I seem to see fine, and other times it is much worse. Is this normal, or is loss of vision supposed to last the whole time until the neuritis resolves itself? I guess that is the part that is confusing me… anyone else know? I don’t drive when I am dealing with it and I never travel out alone anymore “just in case”.

88. In 2004 my very first symptoms included bladder retention, numbness in feet, speaking and other cognitive issues, severe skin sensitivity and L’hermitte’s sign.  Eventually came a severe headache unlike anything I had ever felt that lasted for a week, I spent most of that time in darkened rooms because light made the pain worse.  
    Once the headache subsided I noticed that the vision in my right eye was becoming “spotty” which eventually led to complete blindness in the right eye.  Eventually I started losing vision in my left eye but only ended up losing about 50%.  Once the second eye was affected my Neurologist decided it was time for IV Solumedrol which I was on for 5 days.  It took a little while to get my eyesight back which is almost back to “normal” however I do have some “latency” issues in my right eye and will have bouts of days where I have trouble with my eyes not focusing at the same time.
    I had 2 MRI’s (one brain and one spinal) to confirm the MS diagnosis which detected lesions in both areas.
    Right now my most debilitating MS issue is the fatigue and heat intolerance, although when my vision is acting up that makes everyday tasks more difficult.  This time of year makes doing chores around the house bring on flushing and severe sweating. I also have developed throat spasms which occur several times a day.  However, I feel very lucky that I’m still very functional and know that I could be much worse off…so I would categorize myself as semi-benign.

89. First sign of MS that I had was Optic Neuritis in 1999 a week after the worst upper respiratory infection that I ever had. I had total blindness in my left eye but I still drove to work.  It was treated with Solumedrol and eventually resolved 100%.   Diagnosis  of MS in 2001 after abnormal MRIs and parasthesia.   I started Copaxone injections but I have never been compliant with injecting myself daily. Over thirteen years later, I feel that my MS has been benign and I hope it stays this way.  MRIs have been stable.  Main symptoms I have are a mild case of the MS girdle/band with pseudoexacerbations with hormone fluctuations.

90. I had four attacks of Optic Neuritis before I was eventually diagnosed with MS (over 10 years ago). I have had it less over the years, but multiple times in both eyes. It was the first symptom of MS (and for some years the only symptom). 
    It didn’t affect my lifestyle too badly, except that I couldn’t drive due to the disturbance to my vision. I mainly manifested in the dulling of vision in the affected eye and the lessening of the ability to see the colour red; it also affected my peripheral vision. These days it disturbs my vision less but hurts more. I never had any treatment except taking painkillers for the pain.
    My MS was initially benign; but over the last seven years it has got worse and worse and my Neuro now classes it as ‘aggressive’.
    My ON always went away on its own (eventually) but it could take anything from days to months.

91. Im hoping it does mean his MS is more benign

92. My little boy Sam has MS,hes had ON twice,steriods helped…..ON was one of his first symptoms,he was 5 years old when it first attacked him.

93. I had ON and was diagnosed with MS from there. Painful when trying to
    look around and loss of vision are the main symptoms but not knowing
    what was happen and all the tests were worse than the pain really. Once
    you know what it is and how to manage it makes it so much easier

94. I had steroids -solumedrol- on several occasions. It worked-for a time anyway

95. The ON was very debilitating. I sure couldn’t drive and even as a passenger I had to sit with my head down facing the floor. I couldn’t handle ANYTHING moving at any pace or rhythm in my field of vision. I couldn’t watch TV. I’m glad now because I broke the bad habit of television. I had to get to the bottom of the valley to climb so high to where I am today.

96. My first symptom was loss of sensitivity in my hands. Followed a few days later by ON. I had the worst MS they’d ever seen here in Ireland with more than 40 lesions. I went for 12 months on Tysabri , then quit on PML risk factor back then, then went 12 months just trying various vitamins and LDN, then finally after showing much new activity on MRI, they gave me the Lemtrada. I had to knowingly get worse for a year because Lemtrada was the only drug I wanted. I haven’t had any medication in 18 months, no activity. For some it’s a cure

97. I had episodes of numbness in my left leg over a period of 11 years before I was diagnosed. My diagnosis coincided with a bout of optic neuritis. The optic neuritis began with pain when I moved my eye, it felt like my eyeball was bruised. My vision then became distorted. I would describe it as like looking through a pane of glass with water flowing down it. My optic neuritis resolved without treatment with a week, and I have no permanent damage.

98. I only had a bout of Optic Neuritis 7 years after I was diagnosed with MS. My first symptoms had nothing to do with my eyesight only numbness and balance issues. To stop the inflammatory effect on my eye, I was given 1gram Solumedrol for 4 days, with a subsequent step down pack of steroids. The symptoms I had of Optic Neuritis were a gradual pain of the globe, with loss of vision. I describe it like static on a television screen. After the steroid infusion my symptoms dissipated and my vision returned to 100% and the only problem I have with my eyes now is that they are dry all the time. I go through a lot of lubricating eye drops. My understanding is that dry eyes are very common in MS patients.