Last reply 2 weeks ago
Sort of newly diagnosed, optic neuritis

Hi

I started losing vision 6 weeks 4 days ago to be precise. My left eye is has a gray cloud over the central vision – peripheral is ok. My right eye has blurring on the edges, so if I look at a word, the last letters come in and out of vision. I had IV steroids at 12 days – they did nothing but made me really ill. Had them again 2 weeks later and saw some improvement. I had a black hole in my vision at that point, and people would appear out of nowhere and disappear. That seems to be better. I’m really worried that my vision is now getting worse – it seems more blurry. Is that normal during recovery? Am I being too impatient – 6 weeks and 4 days after onset. Had an MRI and it showed an enlargement of the left optic chiasm extending posterior into the optic track and anterior into the optic nerve. They also saw a lesion at C4/C5 and anterior cord and multiple periventricular white matter lesions. (I love that they sent this in a letter to my doctor copying me in – but no one has discussed these results with me). LP also showed 0 white cells, oligoclonal bands in CSF only, so they have put in the letter new diagnosis of MS. Hopefully someone will get in touch soon to arrange an appointment to actually discuss this with me.

In the meantime – has anyone else had inflammation in the chiasm – I read this is rare. My left eye was mostly affected, my right only started being affected slightly, but the right hasn’t improved. The doctor said the right should improve fully – but he wasn’t sure if I had knackered the left (that was my GP). Left me full of hope. I know 6 weeks and 4 days is not a long time after the onset of ON, but just wanted to get some hope or something. Will the cloud ever lift? Seems like all contrast has gone (if i even know what contrast means) and the left has 0 colour in the central vision.

2 years ago – 2016 I had tingling and a cold sensation in my arm – which they put down to Vit D deficiency, after a big dose that disappeared. I’m getting that might be the C4/C5 lesion.

Thank you in advance to anyone who responds. Just feel so scared and left out on a limb awaiting some information. The hospital don’t like if you call up to ask a question.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


vixen
2 weeks ago

Hello @mtvesuvio, good to meet you. What a horrible time you’ve been through. Your experience at finding out life-changing news by letter is unforgivable, and yet, sadly it goes on. The tingling and cold feeling was most likely a pre-cursor. I’ve been fortunate in not having issues with optic neuritis, so afraid I can’t give advice. But I’m sure those in the know will rock up soon. Stay strong, keep as healthy as you can, and hopefully you’ll find comfort and support through Shift. We’ve all been where you are, so you’re in great company! X


stumbler
2 weeks ago

Hi @mtvesuvio and welcome.

There’s some details here about Optic Neuritis :-

https://www.mstrust.org.uk/a-z/optic-neuritis

There have been accounts on this forum of recovery from Optic Neuritis taking up to 12 months or more, so stay positive.

Do you have a follow-up appointment booked with your Neuro? Although this wouldn’t detract from the poor communication that you’ve suffered. You will be allocated a specialist MS Nurse, as a point of contact for all things MS. If you will not be seeing the Neuro in the near future, you should contact your local MS Nurse direct to discuss the way forward. They can be located here :-

https://www.mstrust.org.uk/about-ms/ms-services-near-me


mtvesuvio
2 weeks ago

Hi @stumbler I called them today and apparently I’m awaiting my referral to be triaged by the ms specialist and then I will go on the waiting list. My hospital have not been great, it took three visits and my GP to call neuro direct and demand they see me to get the ON diagnosis. It’s been awful and like no one wanted to help at all.


stumbler
2 weeks ago

@mtvesuvio , I’d discuss this state of affairs with the Patients Advice and Liaison Service (PALS) at your hospital.


regj
2 weeks ago

Hi @mtvesuvio, it sounds like you’ve been through a particularly rough time. I would also really encourage you to contact PALS (if you are based in England?). I was similarly unsupported when I was diagnosed and I do now regret being so patient! At the time I just didn’t want to make a fuss, but afterward found out that there were some serious admin errors that could have been resolved if I had saught advice. On a more positive note, I am now in month 3 of my latest bout of optic neuritis and my MS nurses think it’s nothing to worry about. It can take time to recover, especially if you have any infections which is often more likely at this time of year. I’m looking forward to spring! All the best


grandma
2 weeks ago

@mrvesuvio Hi and welcome from a fellow Potter. I’m one of the old codgers, had the beast for 25 years, still here, still fighting, especially the government and occasionally the NHS! Once you are settled into ‘the system’ ms nurses are great compared to the neuros (I haven’t seen mine for 8 years, doesn’t meet mere mortals) who are about as much use as a chocolate teapot. Going to court, Newcastle Magistrates, a week today for my tribunal, which I have waited 10 mths for, to fight to get my car back after losing it in February after 19 years with a mobility car so there’s a lot to look forward to! I digress, Stumbler has already sent you the link for info on Optical Neuritis, when I relapse I totally lose my sight unless I get intravenous steroids within 24 hrs of onset, but have stood and argued with junior doctors about getting them quickly so I know how frustrating the wait can be.

You indicate that you’re not yet on any treatment, that will be offered shortly and hopefully you will be told what type of ms you have, Standard terms used in this site, in case you’re not au faith with the terminology, rrms is relapsing, spms is secondary progressive, ppms is orimary progressive, dxd is diagnosed. That will do for now otherwise you will get confused. Send me a pm (private message) if you want and I will explain as much as I can. Don’t know it all, but there’s a wealth of info on this site, we all help each other, always here for a moan, a rant, a cry, a celebration, whatever takes your fancy, we don’t judge and have even been known to crack a joke. No guarantee it will be funny! Just remember, with ms there’s no such thing as a silly question.

Keep as stress free as possible (doesn’t do the ms any good) eat well, look after yourself, remember you are a VIP and should be treated as such, so sit back have a cuppa and a cheese oatcake and keep posting😍


mtvesuvio
2 weeks ago

Thank you for all the replies. I did contact PALs at the start but they were about as much use as a chocolate fire guard. They just said call the eye clinic and ask them to call neurology. When I called the eye clinic they said oh no we have referred you we are all done with you. PALs said they couldn’t see the referral so couldn’t help.

It’s so scary not having all your vision and not knowing if it will come back. I want to go back to work so desperately. But looking at a computer screen for too long is really painful and I’ve got a constant headache behind my eyes and light sensitivity.

I checked the MS nurse but it said I’m not allowed to contact them until I am known to them? I’m doing all I can taking supplements, eating healthy, walking every day. Eating anything anti-inflammatory to try help my eyes. My Gp prescribed me Tavigan (clemastine fumerate) as I can’t sleep at night, so they gave anti-histamines to help. (they don’t help me sleep at all).

@grandma I really hope you go on ok next week and they give you your car back!


mtvesuvio
2 weeks ago

@regj what kind is your optic neuritis? Have you seen improvement over the last three months?


stumbler
2 weeks ago

@mtvesuvio , if PALS are not capable of performing the role that they should be performing, then you have little option than to write to the Chief Executive of the Hospital Trust. Also copy in your local MP, for effect.

This is the type of reason why the NHS costs us, the taxpayer, so much!


cameron
2 weeks ago

And – if you’re in England, you have the option of changing hospitals without having to go through a complaints procedure. Hopefully it won’t come to that but it’s certainly true that MS provision is patchy and can fall short of proper standards. If you do decide to go elsewhere (I did!) you’ll find this site very useful. We don’t name and shame publicly but you’ll get first hand patient experience information via private messages! Good luck x


mtvesuvio
2 weeks ago

@cameron thank you, I was wondering if I should try another hospital but apparently mine has a very good MS team when you can finally get in it. When I told my GP what happened he did not look shocked and said it was a very large hospital and communication often goes missing. I phoned up to make sure I had been passed to to the MS team and have been told they have the referral and the consultant will ‘triage’ it, then I will go on a waiting list…… I really want to access the MS counselling available, but apparently can’t contact the nurses till the Consultant has passed me on.


grandma
2 weeks ago

@mrvesuvio You are in the best place in the area (eventually when you finally get triaged) The ms nurse at the Royal Stoke hospital are great whenYou finally get through. The local s society paid half the salary of the very first ms nurse Nicky (she’s still there 25 years later) when we knew she was what we needed and mr. NHS said they couldn’t afford it so local people power does work sometimes. There are now 3/4 ms nurses and it is counted as a centre of excelence. It is unlikely will see a neurologist, they are to busy writing learned articles for the Lancet, but no great loss because the nurses know far more about living with ms on a day to day basis. It may seem like a long wait but it will be worth it in the end🥂🎂😍


mtvesuvio
2 weeks ago

Thanks @grandma I’ve emailed the nurses to see if I can access them whilst I wait or at least get some counselling. Will see what they say.


mtvesuvio
2 weeks ago

Got an appointment with the MS Specialist through; next Wed – that was fast!


potter
2 weeks ago

While you are waiting you might want to get a screen for your computer, I had to have one when they first came out with computers for homes. I would get nails driven through my head headaches from the screen light. Potter


stumbler
2 weeks ago

That’s good news, @mtvesuvio . Onwards and upwards. 😉


mtvesuvio
2 weeks ago

@potter I think I will definitely need one of them my eyes seem to be getting worse not better! Right eye is way blurry at the minute and the left eye isn’t much use with the grey cloud! Thanks for the advice x

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.