Been to eye A n E to be told I have Optic neuritis

Hi everyone. After 2 weeks of body twitching and blurred vision ( and the rest), last night I had pain behind my left eye, on movement it felt like pulling.I called the gp this morning who told me to go to ST Thomas’ eye emergency department. After many test and a scan they said I have mild optic neuritis. I have not been formally diagnosed and MS has always been suspected. The doctor who saw me said she will email the neurologist and this is probably the missing part of the puzzle. She said if it gets worse to come back for steroids but it usually goes away on it’s own. Just another thing to add to the list of symptoms I have. Lina

Hey Lina! I used to live near St Thomas’ and my family still do. I’m not diagnosed yet either but have all the symptoms. Similar to you, I went to Moorfields with eye pain, blurry vision and floaters where they diagnosed ON and said it could be an MS indicator. I’m convinced it is but think it might be too early to tell as it’s my first ‘episode’ other than suffering from the other symptoms. Hope you get the answers you’re looking for - and hope your eye gets better soon! I’ve had ON for a few months now and no shift just yet - apparently it gets better before it gets worse!

Wow, a few months. I have been having neurological issues for almost 12 years. They have been watching my lesions. Early this year I got all my issues at one time. This episode has lasted 10 months and now I use a wheelchair and mobilty scooter. The occupational therapist got adaptations made to my home,I have a neuro physio who comes to my home and I am under the community nurse team.I have been self catherterising for almost 2 years as I went into retention so I am under urology as well. I have bowel problems which are being investigated and ani aneurysm. I just don’t need all of this at once. I can say my life changed all in one day! I hope I get some answers. I have baclofen for muscle spasms and gabapentin for the neuropathic pain. Have you had any MRIs? and seen the neurologist? I hope you don’t have to be in limbo for long. I would be happy to even just walk again. I wish you all the best. I used to live right by ST Thomas’ but now in the Lewisham borough. Lina

Hi lina I’ve got optic neuritis aswell, i too have had suspected ms previously. I’ve recently had my mri scan of brain and orbits, seeing the neurologist in a couple of weeks. My optic neuritis has improved a great deal this week so hoping the sight will fully recover. Sorry to hear you have alot of symptoms like you do, let’s hope you get some answers really soon x

Oh Lina, I’m so sorry. It was optic neuritis that finally got me diagnosed so fingers crossed for you. Definitely go back if it gets worse. The steroids really helped me with quite a few of the symptoms. Take care xx

Thanks all.

It never ceases to amaze me how everywhere is different. I presented with going blind, i was told to go home rest, it was the heat, or maybe low blood pressure lol.

I presented again a few years later with the pain from hell again in my left eye so bad it felt like someone was stabbing my eyeball. It was scary and horrific. went to doctor they said it was nothing to worry about my eye looked good and no sign of stroke.

this last for weeks and no one cared.

In 2006 when i collapsed I had another bout in 2008 and finally because i was then being taken seriously by a neuro had my first VEP test which showed BILATERAL OPTICAL NEURITIS and the figures were quite high. My neuro said to me did you have signs and i explained and he was shocked. he said the first attack the blind would have been a classic sign of it.

over the years and my last vep test in 2015 i know when i am going to have an attack, weird colour, flashing weird lights in my peripheral vision, and pain on moving my eyeball. another VEP test 2015 and 2016 (it took months to get answer), i was told the VEP was positive again and worsening. so got my diagnoses of MS finally.

IF my first GP had been savvy on MS i think i would never have waited so long. He was slowly retiring and useless.

ON I have realised is yes scary but it can and does quite often resolve itself. If can take upto 12 months.

I have never had steroids as each attack as never really been diagnosed and when it has its too late.

HEAT is a reall trigger for me for ON.

Wow, Crazy chick, How nutz is that, I do agree about heat. Do you know what? I am wondering if earlier this Year when I had double vision and pain in my eyes was it ON then. I got told I had a servere migraine, I explained it didn’t feel like that (I have been suffering with servere migraines for 17years). So frustrating when the gp fobs you off. I have been extremely fatigued over past 4 months. My neuro physio put me on an MS fatigue group which I am learning new coping strategies. I have 2 eye appointments lined up one in Dec and the other in Jan. Surgery appointment in December in regard to my bowels, neurologist on 26th of this month and they have arranged another MRI on 29th of this month so that will bring me up to 4 MRI’s and 4 CT scans and still in limbo.I have several new symptoms taking it to over 20 different symptoms.And the current episode that started in Jan this year has not subsided.I am now in a wheelchair. Lina

I am glad your sight is improving. Thank you. My site seems to be getting worse! Lina

Thank you. I hope I don’t have to go back, I am now getting a spinning feeling with it. Just keeping very still and avoiding the light. I really hope they can tell me what’s going on with me. I feel like I am going mad sometimes. I just want answers. Lina

Hi, I went to see the opticians yesterday for an unrelated issue and they took photos of my eye and my Optic Nerve is swollen so have been referred to an eye specialist on Thursday. I am worried that it may be symptoms of MS as over the past year I have been back and forward to the doctors about my fatigue and had blood tests to rule iron/vitamin deficiency out. I also get very achy legs and back even if I walk up the stairs and get muscle spasms in my upper arm and thigh. My mood swings are all over the place and I can never get an answer in what is wrong with me. Im really worried it could be MS.

Have you been referred to a neurologist? I think you really need to be on at the doctor, they can be very dismissive at times. They eye specialist will be able to give you a better idea of what may be going on and request some tests. All the best for Thursday. Lina

Hi Lina,

Hope you don’t mind me replying (hey, I am new here), but your symptoms sounded just like mine pre-diagnosis. Eye pain, Optic neuritis eventually confirmed, MRI, another MRI, finally a diagnosis.

Had ON plenty of times, and had to give up the scorching hot baths (really used to love those!), a few other symptoms, mostly of the tingling sort, but occasional lack of motor control.

23 years later though, things are fine, me and the family are super happy.

Hi Steve, Of course it ok. Welcome to the site. Let’s see what happens, by the way I now have trigeminal neuralgia ( this was happening before and I thought it was dental). My gp has give me carbamazepine, I have only been taking it 3 days. Let’s see how it works with the baclofen (one of the other medications I am taking). Lina

swollen optic nerve can be down to active ON.