Forum

Optic neuritis

Hi peeps,

Long story shortish: I’ve had problems with optic neuritis for over 8 weeks, have had a course of steroids 40mg a day for a week. They did absolutely nothing. MS nurse had already told me that she would normally suggest 500mg per day for 5 days. GP has prescribed them for me. They had to be ordered in so Gary went to get them and they hadn’t arrived! The pharmacy called the supplier who said they didn’t have any in stock and didn’t know when the next delivery would be! The pharmacy then rang all local pharmacies including Asda etc. No one had any! I then rang my MS nurse who is going to see if she can sort something out.

Here’s why I’m fretting: I can see no problem apart from trying to read/type things. I have double vision, bits missing and some weird 3D type thing going on. After a while it gets even worse. A lot of my job involves staring/typing at a monitor and I’m so worried I won’t get my eye sorted. Kinda wanted to try thre steroids before I go back to work proper

Has anyone else had this problem and have any treatments to help it?

I know its something that will keep coming back but just want to know if anything helps.

Thank you

Oonagh

xxxx

Hi Oonagh, oh hon you are really going through it. I haven’t personally had ON. Try posting on EL where there’s a bigger group and more likely to find somone with info.

The drug problem is a real pain. The drugs cost more in Europe (although I don’t fully understand why) so the drug wholesale companies will sell drugs to Europe before the UK… meaning that there is often a shortage of certain drugs here. It was a bit problem about 3 years ago but seemed to settle down… but that’s probably why you are having problem getting the steroid.

You have my admiration hon. You’ve been going through so much the past few months and you’re still determined to get back to work and still keeping your chin up. But I know that doesn’t mean it’s not hard… because of course it is.

I just wanted to say that really. I know how hard it is for us all and we all try to keep our heads above water… we really are champions.

Thinking of you hon & hope you can get some help for the ON very soon,

Pat x

Hey Pat,

Hope you’re having a good day

Thank you for your kind words, they mean a lot.

Deary me, I just think I’ve got things sorted and another ‘thing’ comes along.

Well, I hit rock bottom yesterday, I thought I already had but it must have been the cr*p that sits on top of the rocks LOL! I was sitting in the living room looking at the fells, sun shining through the french windows cue total downward spiral. All thoughts turned to all the things I can no longer do, images flinging through my mind. Perfect example: Our first ‘real’ walk in the lakes (this was before we actually moved to the lakes) was in Ambleside. It has forever been known as ‘our’ walk. I just cried my heart out.

I called my mammy later on and we had a chat about it. She is in a similar position as my dad is disabled and my youngest sister has learning difficulties. They used to go walking a lot too until my dad just couldn’t do it anymore. She told me to think about all the things I have done and to think about how I would feel if I hadn’t done them at all. It made me really think about how lucky I am to have done all those things. I honestly felt like a huge weight had been lifted.

Sorry I’ve gone a bit off topic but just wanted to write it down

Thanks for reading

Oonagh

thats a lovely way to look at it, i should do that myself!

getting back to the steriods i had a 2 day course of them for my eyes but i had them given with a drip in hospital outpatients dept. they worked for me it was like a miracle lol. have a word with your gp and see if there is anywhere by you that does this.

hope you get it sorted

chris x

Hi Oonagh

I am sorry to hear things are not good for you at the moment, you

certainly have had your share of it lately, try to keep your chin up,

although I appreciate that’s easier said than done. I can’t offer any

advice on ON cos I have never had (not to my knowledge), my blurring

and pain seems to appear when I have overdone it.

Your mam has given you some excellent advice, there is nothing

like a mum to find the right words, try hard to take it

on board, and remember her words when you feel low, I feel sure

they will help.

Take care, hope things settle down for you.

Pam x

Hi Chris, Pam and Pat,

Good news! The surgery has managed to find a supplier and they are ready to collect!! As was said in EL they may not work but I’ll try anything (apart from the drip Chris; I’m needle phobic LOL).

As for my mammy’s words, I have definitely taken them on board and will think of her everytime. Really miss her, my family are all up in Newcastle so its at least a 4 hour round trip for them

Never mind, I speak to them all the time so that keeps me going until their next visit

Hope you’re all as well as you can be

Oonagh

xxxx

Glad you’re getting them at last and fingers crossed that they help.

Hard to be so far from family hon.

Let us know if they work, (the med’s that is… not the family… LOL…)

Pat x

LOL! I surely will Pat I’ve been in the lakes for seven years now so am kinda used to them being far far away Still miss them much. I have 2 beautiful and amazing nieces too. My sis just posted a gorgeous photo of them on facebook, things like that also keep me going

Oonagh

xxxx