Newly Diagnosed - oh my eyes!

Hi everyone! I’m newly diagnosed as of yesterday following a short stay in hospital for tests to be completed.

I’ve had eye issues for 8 weeks, which all started with a huge new floater that appeared one afternoon while working. Didn’t go away after a few days so booked an option appointment who immediately referred me to eye casualty. They advised I had posterior vitreous detachment (natural aging apparently, I’m only just 40!) and to ‘ignore’ the floater and my brain will get used to seeing it.

1 week later, developed diplopia, horizontal. So back to eye casualty for them to advise that the diplopia didn’t seem to be an eye issue, but presented as a neurological issue. Urgent MRI followed a week later.

Once scan was reviewed I was called in immediately to see a neurologist, as lots of ‘old inflammation sites’ were visible and possible new inflammation on my 6th cranial nerve, which can cause 6th nerve palsy (explaining the double vision). Further full spine and brain scan then advised for within 2 weeks. 5 weeks later no scan! Booked privately, but before I got to the scan I had an eye clinic appointment (just to review the vitreous detachment) and ended up seeing a uveitis specialist and turns out I’ve got what they described as ‘snowballs’ which I think is a collection of white blood cells, apparently this is common with MS. From this the eye drs spoke with the neurologist, I was then admitted for urgent scans. Day of my MRI the neurologist immediately diagnosed MS. I had a history of numbness in my legs around 4 years ago and slightly altered sensations when I walk (drs put it down to trapped nerve). Luckily there was enough evidence to not need a lumbar puncture. Lots of new and old inflammation present.

So, now on steroids for my eyes, but advised it may or may not work, but under the eye clinic also for the uveitis and eye motility to try and resolve this issue. Currently wearing a patch on my glasses that at least helps me day to day, stairs, wonky floors and computers are currently not my friend!

Waiting for call from the MS team next week once my case has been discussed.

Interestingly, my brother was diagnosed with MS at a similar age to me with almost identical presentation, although his diplopia was vertical.

Just wanted to share my experience after reading through some of your posts. I think I’m fairly fortunate my diagnosis came quite quickly, it’s quite scary when several drs are poking around in your eyes one after the other! But they did the right thing and I’m grateful for that. I think my eyes might have some other issues too, there were lots of big words said that I didn’t understand, I’ll wait for the letter to come through to find out more!

I think I feel ok with the diagnosis, I think I basically knew as soon as they said it was neurological 7 weeks ago what the outcome would be as went through the same with my bro. Even the neurologist yesterday said he knew I was expecting it! Hopefully we can get a treatment plan in place soon.

I’m hoping this forum and the MS society will be a great support tool.

Keep sharing experiences! Thanks all :smiling_face:

Hi @RosieF
Welcome. I was initially dx when I was 19 and had complete vision loss in my right eye, albeit temporary due to optic neuritis, 24 years ago; it did take a few years for the vision to return to as it was before though.

I didn’t bother with the eye patch, I was told the more you try to see with it, the quicker it will heal.

Having the LP was not so bad, we MSers have a higher content of T-cells in our spinal fluid, it’s definitely not as uncomfortable as the bone marrow biopsy I once had b4.
Thanks for sharing your story, best regards.
JP

1 Like

Double vision was the the thing that got me diagnosed although it was (like you) not my first symptom. The double vision was really quite severe at its worst - vision all over the place - but I am pleased to report that it resolved completely with steroids and has not returned in the subsequent 25 years. I very much hope that you find the same.
I am sorry about your dx.

Hi RosieF. 18 years ago, and like you I was diagnosed with MS after problems with my vision except in my case it was optic neuritis. Like your experience, the diagnosis of MS came fairly quickly after I went to the local hospital having lost vision in my right eye. A more or less immediate MRI revealed ‘quite a few ‘ lesions in my brain.

I hadn’t heard of ‘snowballs’ but asked my wife who, until retiring 5 years ago, was the Sister in the eye unit at the local hospital (years ago, when I visited with Optic Neuritis she was my girlfriend). Apparently they are little collections of dead cells and ‘stuff’ left over after inflammation (whether caused by MS or other conditions including infections). If you have any questions about e.g some of the terminology then I can ask her.

Hope you get started on an MS treatment soon . There are many more and better treatments these days than when I was diagnosed. Do feel free to ask any questions about my experience with MS - in general I’m not too bad but can’t walk at a steady pace for more than 10-15 minutes or so.

Thank you for your message, I try to take the patch off when I’m just pottering around the house, but it’s pretty unbearable when I’m walking down a road or a passenger in a car. I’m hoping the steroids will take effect soon, no change yet (day 3 of the steroids now).

It’s good to hear similar experiences, it was pretty scary when it happened, it was almost an instant change in my vision when it did turn into double vision, from just a bit blurry in the distance to a blink and there was two of everything.

I’m sure I’ll have a LP at some point, but the neurologist was so convinced from my symptoms and MRI I am glad they didn’t do it!

I’ve had low vitamin D also for the last 4 years which I understand is common with MS.

I hope you are doing ok!

Hi Rosie,
It’s quite common, MS starting with the eyes: the right eye for me and predominantly my left side of body, that’s when I first learned, right side of brain controls left side of body and vice versa.

Yes get some vitamin D in whilst it’s hot and sunny now, only problem for me is my extreme heat intolerance, shame that.
Best regards,
JP

1 Like

Thank you for your comment, I’m hoping the steroids do the trick! Otherwise the eye drs have said I may need some quite spectacular prisms in my glasses! My first thought was ‘that’s going to be expensive’! I did have a prism patch added to my glasses but that made me feel worse than the double vision and still didn’t correct it at distance.

I’m not sure if one flare up can cause other flare up in quick succession but I’m starting to get some slight tingles in my right hand (feels like something crawling on my hand, a little like how my legs feel when I walk) but it’s only slight and for short periods. The neurologist did say there was a fair bit of new activity on my scan.

Fingers crossed I’ll be on the right meds soon!

Thank you, that’s really helpful to know you have some inside information on the eye issues! My left eye is full of floaters and bright white rooms and sunlight make them really visible. That’s the eye with the vitreous detachment (that’s one massive blob, which I’ve now named Bruce!) and the snowballs which they advised are causing the mass of smaller black floaters. My right eye feels fine, although the uveitis Dr did spot something in there which I’m sure I’ll learn more about when I have a proper clinic appointment with him.

There’s a lot to take in! Hopefully I’ll hear from the MS team this week to start getting a plan in place.

I’m glad your ok, I think walking might become a challenge for me in later life, just because that’s where I get a bit of a strange sensation when I walk now, and that’s been the same since my numb legs happened 4 years ago (although the general numbness improved).

Thank you for your help :smiling_face:

In my personal experience, when one’s MS is going through an active phase, it can rather be one thing after another!