optic neuritis

Leave a comment Posted on February 4, 2015February 4, 2015 Diet, Patient Talk, Vision

Age-Related Macular Degeneration and Low Vision Awareness Month – Eat your Greens

Kai-lan or Chinese broccoli

Yep that’s it! Our contribution to Age-Related Macular Degeneration and Low Vision Awareness Month.

Eat your greens.( Yes I know it is a bit of an odd picture for a post on vision loss but I wanted to attract your attention to the importance of diet).

It seems that eating more green leafy vegetables can help with age related Age-Related Macular Degeneration (AMD). It can help slow the progression of dry AMD and help prevent wet AMD according to the UK’s National Health Service.

So what actually is AMD apart from being the most common cause of vision loss in the over 50s? Last year PatientTalk.Org created a “user guide” for macular degeneration. We did this by interviewing Victoria O’Connor and Cathy Yelf (from the Macular Society). O’Connor was representing Boots the Opticians.

You can read the guide here!

So what is the point of this blog apart from raising awareness of AMD? Well quite simple. One of the barriers to actually eating more greens is that on their own they can be a bit boring.

So I’m asking my readers to share their favorite green leafy vegetable recipes in the comments section below. (If you run a food blog or site a link would be grand!)

So in the aid of full transparency (well you know what I mean) let me kick off with one of my favorites. If memory serves I found it originally in the Australian Women’s Weekly but it has been adapted a bit since then.

Baby Spinach Pesto

Makes loads

You need:-

1lb or 450g of baby spinach
2oz or 50g pecan nuts (or really any you like)
Olive oil (say two glugs)
2oz or 50 Pecorino cheese or any hard cheese such as Parmesan. Indeed there are some good vegan option these days.
Two closes of garlic crushed
Juice of a lemons

To prepare? Please the lot in your blender and wizz till you get the consistency you like. You might want to add the nuts during rather than the beginning to the wizzing.

Eat with pasta of on top of a baked eggplant or aubergine!

PS The picture above of Kai-lan or Chinese broccoli. I picked some up in Chinatown in london yesterday. Great steamed with oyster sauce!

PPS Can I also mention that green vegetables could assist with Diabetic retiopathy on Optic Neuritis which is an early symtom of multiple sclerosis.

29 Comments Posted on August 7, 2014 Patient Talk, Vision

National Eye Exam Month – Five great reasons to have an eye test!

Why you should have an Eye Exam?

As August is National Eye Exam Month we thought we would share with our readers five signs that you may need an eye test.

As a person with vision issues (I’m now both long and short sighted) I know the value of regular eye tests. Being in my late forties mean that my eyesight is changing fast. So regular check ups from my optician mean that I reduce otherwise significant vision problems.

So we thought we would share with you five great reasons to have an eye test!

a) Regular and unexplained headaches. This is often a sign of worsening vision. If this applies to you them we would suggest a trip to your optician.

b) Improve your performance at work at at school/college. Regular eye examinations help children from some learning difficulties especially with reading.

c) Certain condition such as multiple sclerosis (eg optic neuritis) are often first discovered by an optometrist . Others include high cholesterol, diabetes and glaucoma. As we know early detection means early intervention.

d) Find out if you need spectacles or maybe contact lenses.

e) Finally the eyes act as a window to overall health and wellbeing.

So This August when not get you eyes test!

16 Comments Posted on January 22, 2014September 25, 2017 Multiple Sclerosis

Multiple Sclerosis Flare-Ups. What is a MS flare-up? What is your experience of a MS relapse? Please take part in our research and discussion blog!

Multiple Sclerosis Flare-Ups

I’ve been writing about and researching the stories of people with multiple sclerosis for nearly a decade. In that time I’ve learnt that one of the really big issues is a multiple sclerosis flare-up. Something which rightly concerns all of us in the MS community.

The aim of this blog is to allow our readers to share their experiences of an MS flare-up. In particular we are really interested in how you dealt with the flare and what you do to try and prevent another MS flare-up occurring.

Of course flare-ups are a particularly big issue for people with relapsing remitting multiple sclerosis (RRMS). Indeed the inclusion of relapsing in the name gives the game away somewhat! It can also be called an exacerbation (which is a bit of an understatement) or simply an attack.

A MS flare up is defined as the appearance of a new symptom or the re-appearance of older symptoms. This could involve an increase in fatigue, optic neuritis (https://patienttalk.org/?p=312), balancing problems or increased pain.

Timing is an important issue with a flare up. Technically the symptoms must last for longer than 24 hours and be thirty days after your last exacerbation. However sometimes the replace can last much longer – months in some cases.

It has been suggested that MS attacks can be triggered by infections or stress. However research is still on going in this area.

Treatments are typically steroid based attempting to lower the immune system to prevent it from attacking the body.

As we said at the start of the blog we are particularly interested in your experience of MS flare ups. It would be great if you could use the comments box below to share your experiences. You may well wish to think about the following questions when formulating your answers:-

a) Please can you describe your last replace?

b) How long did it last?

c) Do you know what triggered the exacerbation?

d) How did you treat it and how successful was that treatment?

e) How do you try and prevent a flare up occurring?

Obviously these are just guidelines so please feel free to add anything you think will be of interest to other readers.

Many thanks in advance.

StevieJaye	a) Please can you describe your last replace? This week and it was a spasm in my thigh, which leads to my leg giving way b) How long did it last? A couple of days c) Do you know what triggered the exacerbation? I have a bad cold at the moment, so don’t know if this is the cause. d) How did you treat it and how successful was that treatment? Sometimes I take Diazepam and that works, massage, my normal meds. e) How do you try and prevent a flare up occurring? Sometimes there is nothing you can do to prevent it happening.
loreesaleman	Hang in their! 🙂 I have a feeling u will hang in there until your 80th birthday. I know there’s nothing funny about a ms but I had to giggle when you were explaining about the loosening up when you know you’re going down . It does work I tried explaining this to my hubby and he laughed.tuck and roll I call it. I know this well because my balance is so messed up. along with other things. I try to have some kind of sense of humor about it. sometimes its funny when people are watching me when im walking or I should say trying to walk and you’re like wobbling all over the place when my sense of humor has to kick in and I pretend that I’m drunk . I do take this disease seriously because it affects me and a lot more ways but you just can’t give up! oh how about like putting ice cream and cupboards and having it melt all over… aren’t going to introduce a family member that you known for a while and all of a sudden you forget their name! that’s a good one. People are staring at you! We’ll good luck to you I really mean it, and God bless
JenniferRogers1	Singlemomof2 don’t give up! A lot of what you are saying sounds a lot like some of what I have and still go through. This is why our voices are soo important! This disease is like a thief in the night.. and it’s so hard to diagnose and treat that it’s almost like it doesn’t exist. Oh but it does…and the thousands of us who suffer from it know it does. If what one doctor says to you is no help, go to another one, and another until you find one that will listen to you and refer you to a GOOD Neurologist. The same applies to the neurologist. Keep looking. Never just accept what a doctor says simply because they are a doctor. It’s your body, your life. Take charge! And never give in! Hugs to you, stay strong!
Singlemomof2	I was dx in July of this year. So far I have had problems getting a neurologist. The last one said that the lesions are normal and everyone has them. Then I had another doctor tell me the lesions were caused by migraines, I get sinus headaches, but they’re not that bad. Now I am waiting to get to a new neurologist. Since the new one is in the same office as one of my former doctors I have to get his permission to be seen, which is taking months I am about to go up there and not leave until he says that he okays it. Now everytime I have a relaps, which I am having one now, I have to go to the ER to get any help. They know it is a relaps and prescribe me steroids and gives me some while I am there, but they keep asking me why haven’t I seen a neurologist about this yet. I tell them the problem and they call my family doctor and tell him what is going on and he says he can’t do anything about it. It is so frustrating, I almost want to give up!
Langham27	kathie1026 JamesRtidBlake Yes – I understand ‘random twitches – they are a constant companion as are fluttering eyelids
Langham27	I was diagnosed with MS 43 years ago at the age of 30. Only in the last ten years have the symptoms increased. Fatigue is my greatest challenge. I am extremely heat sensitive – heat wipes me out. My right leg feels like a lump of lead and even my stimulator does not help. I cannot walk far, but put me on our tandem and away she goes – my husband is fatigued far more than me. The fatigue affects my comprehension and memory – on a good day I am as sharp as a fox, on a bad day mental battery FLAT. Never know what the next few hours/days will bring. Frustration leads to depression, so I tend to pace myself more these days. 73 next birthday. Next goal is to reach 80, still on my feet!! An effective treatment etc seems a long time coming, and many of us feel sometimes we are just left to “get on with it” Had a diabolical period of severe face pain some ten years ago. Treatment with Carbomazapine and Ammitrytylene were brilliant and thank goodness it never came back. No other pain to complain of – just sometimes shooting pains when I flex my neck forward and severe cramps in right leg sometimes. Balance is worse when I am tired. Fell and broke one rib and badly bruised others a few weeks ago. On the mend now, but these tripping or falling episodes really knock ones confidence. Something MS does teach us…. when you lose your balance, don’t stiffen up, loosen up – the landing is then less painful and the damage is no so long lasting.
invictus582	This article is informative but so frustrating to me. I was diagnosed in 2010 and had a bad flare up right afterwards and started Copaxone pretty soon after dx. After that my symptoms were managable but have gotten consistently worse. I don’t think there are any new symptoms (except possibly the noise sensitivity and dyslexia type things that have been happening) but the fatigue, focus, cognitive issues, optic neuritis, etc. have all been consistently worse and now to the point that I have to stop running my business to take medical leave so I can hopefully get things under control. When I visit the neuro (and a different neuro I had last year) they all say that it’s just ms symptoms and basically nothing can be done (although new neuro recently said to change meds to Tysabri), and even though symptoms are worse it’s not considered a relapse. This has been going on for over a year and it’s to a point now where I pretty much don’t even like leaving the house. Sorry – had to vent. I wish these Drs could get on the same page. I’m looking forward to taking medical leave so I can try and get this figured out myself, although that’s not the way I think it should be when the Drs are making so much money.
KimRobinson1	Diagnosed 12/08. Last flare up was September 2012. Lasted about 6 weeks. I’m guessing too much “fun in the sun” is what caused this one. Called my neurologist and he set me up on 3 days of steroidal infusions. Cleared up my vision almost immediately:) However I had to use a walker for almost a month because I had weakness and pain in my legs. I felt so old having to use a walker at 31 years old. But its my life, and I’m too determined to be defeated:)
BincyPhilips	Hi I’ve been diagnosed in 2009…..to tell u the truth…I do not know the difference between a flare-up, relapse,and exacerbation…..can anyone tell me….now I think I’m having a flare…ataxic, numbness on both feet and hands….I’m on Rebif and gabapentin….also calcium,vit D3, B12 ….
Loriawilson	I got diagnosed in Dec 2012. I have been on Copaxone. I have only had one flare up since then. I felt like I was drunk. I was slurring words (not bad but it was noticable). It lasted 3 days before I called the dr. He put me back on steroids to help. Ive been on them for about 8 days and I feel better but still feel kinda “off”. This is my first flare up but I am going to look into changing my diet somewhat to see if that will help with future flareups.
kathie1026	In reply to JamesRtidBlake.JamesRtidBlake When you say, “random twitches,” are you talking about the nerves jumping somewhere on your body (it feels like the nerves jumping when your lower eyelid sometimes quivers)? I can’t get anyone to understand what I’m saying when I talk about the “twitches.” Thanks for your reply.
JamesRtidBlake	My last flare-up was 2years ago and it came out of nowhere, couldn’t move my legs properly and i had my toddler son with me, scary. Before that, roughly about 4 and a half years ago, i experienced random twitches, fortunately recovered fully with steroid treatment. Unpredictability is the only word i associate my m.s
HazelHall	Im just getting over one and when it happened i just carried on my day with blurred vision and new symptoms such as bad spine pain and crazy little movements on my leg and side of face and i needed to urinate more often and was very tired. I was dx in feb last year and its been crazy spuradic relapes and flare ups. I have an infection in 2 teeth which triggered the flare up and my monthly cycle doesnt help. But i take primrose oil vit d fish oils vit e and make fresh mix greens and dark berry smoothys which help and cut down on my gluten. Im on gabapentin aswell as avonex. Im begining to feel better.
RachelLaurn	I was diagnosed in 1999 and since then, I have had at least 13 MS attacks.Each one was different and affected different parts of my body. One of the most severest was when my Peripheral Nervous System (PNS) shut down. PNS controls our involuntary movements. My body temperature went haywire. One minute, I was so hot, I needed ice cubes to cool my skin. The next minute, I was so cold, my hands turned white and wearing gloves inside he house was not enough. I used a heating pad on top of my gloves. My heart was racing for 2 weeks. I had to take medication to slow my heart down so I didnt have a heart attack. I couldnt stop yawning until I would almost pass out. Digestion was nonfunctional so I could only eat one bite at a meal. My eyes would not work together. I had to cover one eye to see out of the other, without double vision. But the very worst part was that my equilibrium was NONFUNCTIONAL. I felt as though gravity didnt apply to me and that my body wasnt part of the earth. I cant explain the feeling, only that I was so confused and scared, I wanted to just die and cease to exist immediately because all time had stopped for me – I was in “limbo” trapped inside my body. I, therefore, could not go to the hospital, because my body was being ravaged in 10 different ways at once. A nurse came to my home for 3 days and gave me steroids. They did help tremendously but I was not symptom free for about 2 weeks. This attack will be scarred in my memory forever. It scares me to even talk about it.
geek1	a) Please can you describe your last relapse? Ongoing. Right side (toes to shoulder) numb, pins & needles, tight, with some lose of strength. Clonus in foot. Unable to use right hand, which I cannot steer. It is also painful. Cannot touch nose with finger (eyes-shut test). Left hand and foot numb. Both thighs stiff. General temperature disturbance. b) How long did it last? Started 3 weeks ago c) Do you know what triggered the exacerbation? Poor diet? d) How did you treat it and how successful was that treatment? High dose IV steroids over 5 days. Unsuccessful e) How do you try to prevent a flare up occurring? Continue with Copaxone. Will go back to a diet low in sugar and fat, and high in vegetables, fruit and lean meat
meekocat	a) Please can you describe your last replace? Not sure what you mean? My last relapse was February 20, 2013. b) How long did it last? I am still having symptoms. Original symptoms were numbness and tingling in both feet with my right foot worse and severe spacisity in my right ankle. c) Do you know what triggered the exacerbation? I believe a fall down the stairs triggered the relapse. The only one I had prior to that was October 2011 when I couldn’t urinate, had to have a catheter put in, I also suffered from extreme fatigue (felt like I had Mono or something) and slept for almost 4 days straight. MRI and CT scan done on back to determine cause, none was found. They never asked or looked for MS. Looking back now I had a few episodes with getting up with numb feet and saddle area as well as tripping all the time and extreme fatigue. I just thought it was age-related. I am 54 now. d) How did you treat it and how successful was that treatment? I was just now DXD on Jan. 2, 2014 with RRMS. My neuro had me do a 5 day solu-medrol infusion. Still have numbness and tingling in my feet, but I am walking a little better. e) How do you try and prevent a flare up occurring? I’m supposed to be starting Copaxone injections, still waiting for approval from my insurance.

2 Comments Posted on December 16, 2013March 22, 2017 Multiple Sclerosis, Patient Talk

Optic Neuritis – what treatments have you received for optic neuritis? Take our poll

Optic Neuritis

For many of us optic neuritis is one of the first symptoms that present for multiple sclerosis. You may be interested in a previous blog we ran where many of our readers told their optic neuritis story. You can read them here https://patienttalk.org/?p=312.

That being said their are a number of other conditions which can also lead to optic neuritis. These include syphilis, Lyme disease, herpes zoster, lupus, neurosarcoidosis, inflammatory bowel disease, vasculitis, and diabetes.

Today we would like to explore in more detail the treatments people have received for optic neuritis.

It would be great if you could take our poll below to share your experiences.

Feel free to use the comments box below to add anything you think may be of interest to our readers.

Thanks in advance

130 Comments Posted on May 8, 2013April 3, 2017 Patient Talk

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

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?

Do you suffer from optic neuritis? How long have you had it?
Was it the first sign or symptom of multiple sclerosis?
What affect has optic neuritis had on your lifestyle?
Did you use any treatments and to what extent did they work for you?
It has been suggested that having your first symptom as optic neuritis means that your multiple sclerosis is more “benign”. Is this true for you?
Have you any advice you would like to give a person who has just found out they have optic neuritis or multiple sclerosis?

Please feel free to add anything of interest in the comment boxes below. If you have any links you think may be of interest to our readers please feel free to share.

Thanks very much in advance

You should definitely be referred to a neurologist and have an mri. When I had optic neuritis my optometrist referred me immediately to eye specialist who told me it was highly likely an early sign of ms. I was given an MRI straight away and then referred to a neurologist. A neurologist is the best qualified to determine if it’s ms or not based on MRI and other information. I’d be getting another opinion if I were you. All the best.

I had optic neuritis 12 years ago in one eye, with a strong dose of steroids I was able to get my vision back. MRI scans showed a few leasions but my doctors not keen to say yes to ms. A week ago I developed blurry, double vision. Was told nothing they could do, vision would come back by itself in 3-6 months. There is no talk of getting another MRI since my eye specialist doesn’t think it’s linked. I’m feeling very uneasy, my dad has ms and when I read all the vision problems people have leading up to diagnosis, I’m concerned they aren’t taking this serious.

For me, Optic neuritis was the concluding sign that I had RRMS. I was diagnosed at 20 and I am now almost 28. The first way thay they chose to treat it was that I went ibto outpatient services at a hospital 5 days in a row to ger hooked up to an IV of Solumedrol. I never noticed results immediately but within the few days after I had finished my outpatient visits I slowly started to regain some of the vision back. This first bout it was in my right eye. I unfortunately had other relapses where ootic neuritis was the main issue during the relapse and it had actually happened in my left eye . All i know is that I am very thankful it has never been in both eyes at once. My vision is not 20/20 anymore but i have gotten almost all of it back. Now these days I am struggling with a new symptom, my biggest fear, my mobility. I randomly (like we all know how thid is do unpredictable ) get drop-foot, where I cannot lift my right foot off of the ground to walk properly. So I’m not positive that just because the first symptom was optic neuritis thst it would mean its a milder case..i only say that because I feel with my mobility now being compromised that it has become more aggressive and thus new lesions.
But, the good part of having this type of MS is that there are soooo many days where I go forgetting I even have it. I don’t define myself by having this disease and stay as positive as I can. Best advice: KEEP MOVING. DON’T LET IT CONSUME YOUR LIFE. EVERYDAY Is A NEW DAY. 😀 wish everyone the best!
-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