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