Optic Neuritis – An early sign of multiple sclerosis? Share your optic neuritis story here!

Optic Neuritis
Optic Neuritis

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?

  1. Do you suffer from optic neuritis?  How long have you had it?
  2. Was it the first sign or symptom of multiple sclerosis?
  3. What affect has optic neuritis had on your lifestyle?
  4. Did you use any treatments and to what extent did they work for you?
  5. 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?
  6. 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!
-Jennie

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.

81.159.247.60
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

128 comments
Kbreals
Kbreals

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.

AussieKylie
AussieKylie

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.

JennieJo
JennieJo

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. :-D wish everyone the best!

-Jennie

Clau8909
Clau8909

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

MSindependent
MSindependent

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.

RosiLaraLara
RosiLaraLara

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.

AussieKylie
AussieKylie

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?

RebeccaJHardrick
RebeccaJHardrick

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.

angcharles
angcharles

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.

tazcliff
tazcliff

  1. Do you suffer from optic neuritis?  How long have you had it? No
  2. Was it the first sign or symptom of multiple sclerosis? numbness tingling in L leg and hand
  3. What affect has optic neuritis had on your lifestyle? n/a
  4. Did you use any treatments and to what extent did they work for you?n/a
  5. 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?n/s
  6. Have you any advice you would like to give a person who has just found out they have optic neuritis or multiple sclerosis?n/a

kaybrosnan
kaybrosnan

Lost the sight in my right eye in June 40 years of age. Ended up in cork hospital ms confirmed:(

ErynNickerson
ErynNickerson

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.

deafadam
deafadam

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

PamBlas
PamBlas

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

cmubfly
cmubfly

@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.

PamBlas
PamBlas

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.

ShirleyBailey
ShirleyBailey

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.!"

Roxannestanbridge
Roxannestanbridge

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

Helen mary
Helen mary

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 !!!

reentopo
reentopo

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.

Like · Reply · 9 minutes ago

Kristier1979
Kristier1979

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

jaletta
jaletta

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buggs
buggs

@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

peeldeen
peeldeen

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

peeldeen
peeldeen

@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 :)

Dee Loughner
Dee Loughner

@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...


ronco04
ronco04

  1. 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 
  2. Was it the first sign or symptom of multiple sclerosis? Yes
  3. What affect has optic neuritis had on your lifestyle? Only that first two weeks
  4. Did 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 sucess
  5. 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 cannot speak to that however I have RRMS
  6. Have 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.

DaphneRoberts
DaphneRoberts

  1. 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.
  2. Was it the first sign or symptom of multiple sclerosis? yes
  3. What 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.
  4. 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.
  5. 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 
  6. 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.  

MaryanneMousheyEngland
MaryanneMousheyEngland

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

LeanneBuskirk
LeanneBuskirk

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

hutchy53
hutchy53

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.

marshapennartz
marshapennartz

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!!

KixPeace
KixPeace

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

Dee Loughner
Dee Loughner

@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...

tlc2tfruitie
tlc2tfruitie

  1. Do you suffer from optic neuritis?   Yes   How long have you had it?  Just over a year now.
  2. Was it the first sign or symptom of multiple sclerosis?  Nope
  3. What 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.
  4. 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!)
  5. 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.
  6. 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.  :)

MikeDeegan
MikeDeegan

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.  

HazelHall
HazelHall

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.

RosiLaraLara
RosiLaraLara

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,,,,


Heather Hoag
Heather Hoag

  1. 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.
  2. 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.  
  3. 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.
  4. Did you use any treatments and to what extent did they work for you?
  5. 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.
  6. 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.  

PamelaMarcum
PamelaMarcum

@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! 

Heather Hoag
Heather Hoag

@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.  

cmubfly
cmubfly

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 :)

IanFlaherty
IanFlaherty

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!!!!

AmyButler
AmyButler

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! 

Jennifer James
Jennifer James

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 .

starsfan8
starsfan8

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

LoriMorefield
LoriMorefield

@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.