Last reply 7 months ago
Deflated and worried

Had optic neuritis as some of you know in October and it’s a slowwwww recovery but on 21st December at the ophthalmology appointment I could read 20/30 with left eye. Right eye blurriness had gone, still a cloud over left but it seemed to be lifting some. This was very welcome after 11 weeks. On Boxing Day my right eye started going blurry again and has now been blurry for 5 days. That’s my good eye so you can imagine how worried I am. Don’t know what it is – I had a MRI on the 27th as a routine one To see the which meds they will want to offer me. Haven’t been busy over Christmas as only just diagnosed and it’s been a bit of a down one to be honest. Waiting for a call back from the MS nurse to see what she thinks. Things were just starting to look a bit brighter.

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7 months ago

@mtvesuvio don’t worry. Stress is the worst thing for ms. You are going through a sticky patch and you are just on the edge of Limboland. You’ve been diagnosed, you are waiting to see a ms nurse and you are having problems with your sight, all these add up and you are in the middle of it and it’s a bank holiday weekend. Ring your ms nurse on Thursday, tell her what you’ve been going through, if she’s any good she will help and hopefully move things along. Keep your chin up, we’re all with you.πŸ₯ŠπŸ‘‚πŸ˜

7 months ago

@mtvesuvio , you live in the UK, so you’ve been busy over the last couple of weeks, if only to avoid the madness that everyone else joins in.

But, Christmas aside, you have been dealing with a recent diagnosis, whilst managing the visual damage from an earlier relapse. There’s also the forthcoming discussion on Disease Modifying Therapies (DMTs). Understandably, this is possibly a very stressful time for you.

And, there’s the rub, stress is one of the major antagonists to our MS and is best avoided.

You really need to just sit down and rest, as worrying is inherently counter-productive. Try and rest your eyes too. Try listening to music, then you can just keep your eyes closed/relaxed.

7 months ago

Hello @mtvesuvio, the period before and during diagnosis is the worst. Everything should now start falling into place, especially if DMDs are in the cards as you will be carefully monitored. Your body is still in recovery mode and that may take a while, so be patient and kind to yourself. Hope you feel better soon and get all the support you need. And posting on here can be therapeutic as a venting outlet! X

7 months ago

Thank you for your responses. I think I just thought once I was starting to recover it would get better. I didn’t anticipate that my eyes might get sensitive to light or go blurry again.

I’ve always been so healthy and this is knocking me for six!

7 months ago

Hi @mtvesuvio, sorry to hear you are dealing with this symptom. This was my second symptom after fatigue. I knew something was searously wrong when this happened. I was misdiagnoised at first and I was put on a dose of oral steroids and it almost went away. I got my diagnosis a few months after and I was put on a DMD the following year. I still got it at times especially when I was very fatigued but it got better with steroids. The last time I got it in 2014 when I had a relapse. I changed DMT and it got 95% better. It’s still there a little at times especially when I am looking to the right but it does not bother me anymore. I remember it was very worrying at the time as it hit out of the blue and I didn’t know what was causing it. Hope you get the right medication soon. X

7 months ago

@grandma spoke to ms nurse today didn’t find her that useful she was happy to wait until next Thursday and will then decide if I need more steroids πŸ™

7 months ago

@leogirl I wouldn’t wish this on anyone it’s terrifying and just when I thought it was finally improving my other eye has gone blurry. My inflammation was on the optic chiasm where both eye nerves cross so although it really affected my left eye my right had started to get affected towards the ends! It’s such a long waiting game hoping for some healing and I’m doing everything in my power to help it. Healthy diet, vit d, omega 3, meditation!

This was a bolt out of the blue for me as I have always been so healthy and then this hit out of nowhere so it’s all been a bit overwhelming.

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