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Panicking. Please help. So scared

Hi. I woke up this morning to find my eyes even more blurry than they had been in the last week. Because both eyes are now affected it freaked me out enough to go back to hospital who immediately referred me back to the emergency eye clinic. After numerous tests they came to the conclusion that it was another attack of optic neuritis. (my first ever attack was in May this year). However, he could see no swelling of the optic nerve or disk. Also, the extensive mri scans I had a few weeks ago showed no lesions either. He said that even though it can’t be seen on mri scan that it still is ON because of my symptoms and the fact that I suffer with myelitis. Even though it cant be seen on mri, another consultant told me that I will get an ms diagnosis because it is 2 (now 3) separate events. Is that right?

He also couldn’t explain why it comes and goes. Monday/tuesday last week bad. Wed/thurs worse, Saturday/Sunday near normal, Monday bad in the morning but improved in the afternoon . This morning dreadful in both eyes. He said it was just the nature of my ON and it follows a similar pattern to my myelitis in that it fluctuates. I’m sure he is telling me the truth… but I cant find any information to support that. Is it right that ON can fluctuate daily/weekly? I have another appointment at the eye clinic next wednesday to assess how things are. I am really worried because work are concerned because this is the 3rd day I have had off in the 8 months I have been there. I am concerned that it will affect my employment as they are a small family firm. I was dismissed from a major blue chip company in 2006 after 10 years and I just feel like I am getting a bit of life back and now this happens.

Hi Bizzy

I cant give you any reassurance one way or another. I am wary of posting on threads like these incase I get things wrong or say the wrong thing but I felt I had to share with you my ON experience.

2 years ago in July, I developed a blurry right eye and had issues with colour, I was referred by the optician via my GP to the eye clinic at the hospital. My 1st appt was in October and subsequent MRI was in Jan the following year. They all talked about retrobulbar ON as there was no visible swelling of the disc. Like you, I would have it on and off, sometimes worse then others. I also noticed that I would suffer more when I got hot (after going run a run or having a bath) and they called this uhtoffs sign (please forgive spelling). Anyway, the result of the MRI was that there was no inflamation of the optical nerve and there was no demylination so ON was ruled out to some extent. I still suffer from blurryness, sometimes more than others and it bugs the hell out of me. My optician is absolutely adamant that I should have had a diagnosis of ON, especially as I had issues with the colour red.

So, fast forward to my appt with the neuro. Told him all of this and he said outright that it wasn’t ON. He said ON starts, stays for a week or so and then goes - and you do not get persistant blurryness. Also because I did not experience any pain, he said that was another reason why it could not have been ON. What he did say, however, was he does think I have an issue with my optical nerve and I am just waiting for Visual Evoked Potentials testing.

So, I am looking at this screen though a blurry right eye and have no idea what is wrong anymore.

I have no idea if this has helped at all (probably quite the opposite and for that, I apologise) but I just wanted to say that I sympathise.

Hugs. Angela xx

I also get intermittent blurry vision mainly to my right eye I take my glasses off to check its not them smeared sometimes but they never are. Have been told no sign of ON but have had pain to that eye too. Btw Angela I also get blurry vision after running never thought of it as a symptom Axx

I have had blurred vision in my right eye since 2.9.13. There is no pain though I did have a headache for the first week. The hospital have said it is ON as I have a swollen optic nerve. They also said this may be a symptom of MS or a brain tumour. My MRI appointment should come within the next two weeks. It’s the first attack I’ve had so I am also panicking and have been off work this week. Any advice anyone?

Hi and thanks for your replies. I have to go back to the eye clinic next wednesday for another check. Then I’m seeing neuro on friday for the results of all my tests ie. lumbar puncture, mri, evoked potentials etc. My vision has improved a lot over last 2 days luckily. Just want to get back to normal! (well as normal as my body allows). It is just another waiting game I guess…as frustrating as it is! x

Hi and thanks for your replies. I have to go back to the eye clinic next wednesday for another check. Then I’m seeing neuro on friday for the results of all my tests ie. lumbar puncture, mri, evoked potentials etc. My vision has improved a lot over last 2 days luckily. Just want to get back to normal! (well as normal as my body allows). It is just another waiting game I guess…as frustrating as it is! x

Good luck with everything this waiting game is awful isn’t it. A

Good luck with getting some answers.

Good luck, hope you get some answers x

Hi I am sorry to hear of your vision issues. You say that you have myelitis - is that transverse myelitis? I am interested in that as it was mentioned to me - I am undx at the moment. How does the myelitits effect you.

Moyna xxx

Hi my mother has ms and she has it in one of her eyes. I was told by a friend who has ms that he knew a woman who had ms that stress made her eyesight go and her sons used to find it very funny to wind her up and then when her eyesight went,go out because she couldn’t see them. I have noticed when my mother gets stressed her eyesight gets worse so could this be why your eyesight is worse sometimes? Maybe not,but I thought I would offer it incase it helps. Hope you sort whatever it is.god bless Emma x