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Newly diagnosed 48 hours ago!

Afternoon all!

I am not new to this site was on it last year when i was in limbo but came off cos i was getting too scared lol.

I have now officially been diagnosed. It is a shock but im not suprised! Very up and down emotionally.

At the moment I am suffering my second flare up which has resulted in optical neurtis. my god its awful. Have pretty much lost sight in left eye. Going back to my neurologist tomorrow who is also a neuro opthamologist which is very lucky.

We are going to discuss things like my eye and treatment etc.

Has anyone else had optic neuritis and if so…please give me advice lol

lots of love x

Hi Beccygreeneyes, Sorry can’t help with ON but just wanted to lend you some support over your dx. Sorry to hear it and you’ll probably be fairly shocked right now but also relieved that you know for sure what it is. Take it a day at a time atm. You won’t easily be able to take everything on board all at once. Look after yourself - you may find that your loved ones don’t really understand, how can they? Only other MSers really understand. Know that all on here are ready to listen and give you support. Keep coming back when you need it! Thinking of you, Teresa xx

Yes Ive had it twice…it DOES get better. I have chosen not to have steroids both times.

If it causes you to feel sick when your brain is trying to make sense of the strange things you are seeing it may help to cover the affected eye.

People thought I was terrible for saying I would rather the sight went completely than one eye being normal and the other throwing up all sorts of conflicting and disorientating images but all of that has passed. The worst part and the worst pain should be over in a couple of weeks and I would suggest resting up and letting yourself get used to the dx,and make any adaptations that work for you with your sight.

The washed out look and colour vision is likely to remain but it wont be noticeable in every day life unless you do a cover up comparison.If you are like me you are probably testing your bad eye regularly throughout the day at the moment.

This probably doesnt help you much but hang in there.

Take care

Pip

Im not dx yet but have ON in both eyes too… it is horrible, makes your balance go funny and your brain seems to not work correctly. I have blurred vision in both eyes (kind of like looking through binoculars). I can only suggest you rest up when you can, and accept that it will go. I started with ON in my right eye (bout a third of my vision was too blurred to see), it has improved over the past 8 weeks, but last week I got it in my left eye too, so now Im waiting to get a referral (seems its tough to do even that!), and wait it out. I cant drive at the moment as my eyesight is too bad, I feel like my balance has gone even more haywire now so I dont trust myself to go out of the house at all. Its boring being in the house all day, especially with no energy to do anything either!

Good luck and I really hope the ON goes soon x

I’ve had it once and after 2 weeks of constant double vison had steroids and it did the trick. Felt completely terrible for about a week then woke up one morning and could see. It was like starring in my own bad B-movie. Where you on here last August, I think it was you who was bad taking tablets? The steroids were IV but worth the week of hell once they started to work. Chis x

wow so overwhelmed by ur lovely messages! thankyou. going to my neurologist tomorrow and will discuss everything so will post what happens when im home.

Yes i am wearing an eye patch at the moment i feel lke i should buy myself a parrot aswell!!!

it is so boring being at home all day i dont like it. its particularly hard as i am studying to become a nutritional therapist and also working as a nutrition/health editor for an online paper

www.finchleyarrow.co.uk if you are interested in reading my articles haha shameless plugging

thanks for all the advice…yes everyone tels me it goes and i just cant wait till it does. spoke to my neuro on the phone earlier and he promises me it will go. he said by the weekend i will notice a difference but like u all say it doesnt go overnight

yes chris that was me! i am very anti steroids after they destroyed me last year. plus neuro said he wouldnt really give them to me as this is my first on and he says its better to wait it out

x

x

hiya…so sorry to hear of your diagnosis and ON too…I have had in left eye mid jan and its now resolving from a neuro perspective. still left with poor vision although I was fairly short sighted before,m which hadn’t helped as now only just legal to drive with new glasses/contacts. my vertigo flared up during the on which is all part if the brain tring to make sense of it all. plus my good eye has gone lazy all the time which isn’t great. it will improve just takes time and adjusting which isn’t easy in every day life…hang In therefvand hope your appt tomorrow’s prioductive. let us know how you gt on. did you have a brain MRI too? em

thanks em. my story is quite long. i did have one last year when i had numbness and tingling from the waist down. had an mri of spine and brain and they found multiple lesions. back then they said was a one off but obbvs having ON now is counted as my 2nd attack which led me to being diagnosed. will let u all know how i get on later!

thanks em. my story is quite long. i did have one last year when i had numbness and tingling from the waist down. had an mri of spine and brain and they found multiple lesions. back then they said was a one off but obbvs having ON now is counted as my 2nd attack which led me to being diagnosed. will let u all know how i get on later!

Good luck for today Beccygreeneyes xxjenxxx

Hi guys

so i had my appt yesterday

Am still pretty much blind in one eye. u relise how much u take ur sight for granted with optic neurtis i tell ya!

He did say it will come back but v slowly.

Anyway so next step is to go for my brain scan next week so he has a compariritve scan from my last one back in october. Then i will go back and see him and we can discuss treatment…if i do decided to do it it will be somethng called copaxone? anyone know much about it?

yea so its very much official now!!

keeps hitting me on and off and its scary.

i just want my sight back properley! :frowning:

x

Hi

Sorry re your diagnosis it really sucks and theres no getting away ftom it.

I have had the sight issues twice now and have been left with much less sharp vision than before but it does slowly improve mine got much better pretty rapidly then took ages to get to where it seems to have settled now.It seems like you are getting great care from your nuerologist which is fab wishing you all the best

x

YOUR SIGHT WILL IMPROVE, just hang in there.

Is your dx official now then seeing as he is discussing DMD? Will you be given the choice which one you want or is he saying copaxone is the only one you can have?

I chose to have copaxone 2weeks ago but I did have the choice of all of the injectables,and basically did the msdecisions guide which lead to my deciding on copaxone.

I guess your mind is all of a tizz at the moment but when you have time have a read .search msdecisions and it will guide you through the treatments currently available.

It is good because you can make the text big so its not such a strain to read.

Take care Pip

Hi R - glad to see you decided on a DMD :slight_smile: And an MRI! Good for you :slight_smile:

Kx

thanks guys. lots of love to u!!! look im not even sure im going to do down the drug route yet but at the mo im gna leave it maybe wait 4-6 months and see.

there is no pressure!

yes my neuro is fantastic! i highly reccomend him. still in shock and keep crying on and off…it feels like someone has died!!

did u get this reaction? x

Yes Beccygreeneyes, That is exactly what you are experiencing, grief! You are grieving for the lost you. Have a look at ‘the five stages of grief’ on google. It may help you to understand how you feel or why you feel that way. It’s tough atm and you will gradually feel better but it will take time. Stay in touch, Teresa xx

hi teresa

thanks for ur message!!

yes its very weird…each day i wake up hoping my sight has miraculously returned but alas! that is not so! :frowning: it will be 2 weeks on monday since this started so i guess my symptoms are pretty standard so far!

how do u deal with ur ms on a daily basis? have u ever had optical neuritis?

Hi Beccygreeneyes, No, I’ve been very lucky so far. My vision appears to be fine. I don’t think the MS specialist believed me when I said it was OK, lol. He did endless tests on my eyes to see if they were alright and had to give up because they were fine. However, I did have an abnormal VEP and he could see that my eyes did not react normally to all he did. Yet, I can see well. I’m not at work anymore as my legs will not allow me to dash about, or even walk to and fro all the time as I needed to as a supply teacher. I do my best (I have four children) but my husband works quite a lot from home so he can help me. I cannot even pick my youngest son up from school as my legs won’t easily go that far. My older sons help out quite a lot. I’ve had to adapt a lot in the last few months but you’ve just got to get on with it. I’m muddling through atm. It’s quite tough though. Keep your chin up, you’ll get through too! Teresa xx

ahhh thats good.

not good about ur legs im so sorry…u sound like a very strong lady. Im fortunate in that the 2 attacks i have had have been purely sensory apparently ON is counted as a sensory attack even tho im half blind! so apparently i have that on my side.

Are u on any treatment? I am extremely reluctant to go on it but my neuro says there is no rush.

xx