So recently I’ve been diagnosed with optical neuritis… well a couple of days ago… upon this diagnosis I had a lot of blood taken… I got some blood results back normal but am awaiting further results for ‘auto immune conditions’ and a brain scan… they did mention multiple sclerosis.
Because I presented to an emergency eye hospital I haven’t been given any information at all or support I’m waiting on appointment to see a neuro-opthamologist… I’ve looked at symptoms of MS (yes I know I’m a complete noob) and do have several symptoms which I’ve just been living with (bowel and bladder problems, pain and tingling in fingers… painful joints, vertigo, and overwhelming fatigue…
So now I have had a few days to reflect, I’ve decided to join this forum as I await my brain scan mri, I’m also losing the vision in my left eye, which is obviously distressing…
I believe a large percentage of those with Optic Neuritis (half, if memory serves) goes on to develop MS but it can also stand alone, I think what happens for many is that when something more ‘blatant’ MSesque appears, everyone looks backwards and makes sense of other symptoms. Also lots of things can cause your other symptoms re vertigo etc, including things such as Lupus but medics will look frurther at the spectrum of possibllities
Good you are getting an MRI, that is the definite starting point of getting to the bottom of things for you
Hi, I had optic neuritis over a year ago. I am still under going tests, was originally diagnosed with CIS (clinically isolated syndrome) with migraines because I have always had them. I have been put on vitamin D high dose, which is normal for potential MSers I believe. I have had 2 MRIs, one brain and orbital, the other full spine and brain. I had an LP a month ago and am expecting an appointment to get those results. I was told 25% chance of MS if tests show nothing. 50% is the rough guide without tests. If you have lesions in MRI 75%. Although I found all of that meaningless while struggling to see. I had a second episode of optic neuritis on lockdown and potentially had it a few years ago, although optician didn’t write it in my notes. This is the right place to be, so much support. its a long old wait, so be prepared these things take a long time. Over a year of tests for me so far. Just stay positive, I know it is hard.
Hi, I had 2 episodes of ON which ultimately led to my diagnosis. The good news is that your vision will return although not always as good as it was before. There is a road to follow of which MRI’s are just one stop to your destination. I’ve been relapse free for 31 months. Bloods, MRI’s are all good, so try and stay positive at this difficult time…
Thank you all for your comments… Writing all my symptoms down it’s highly likely to be MS… it even explains the reason why I feel so ill after a bath… so my scan is next week… I’ll keep you updated x
It’s good that you’ve got your MRI lined up. I had an MRI last week, so am just in limbo at the moment. No one here can confirm if the symptoms are down to MS, but I have found it reassuring to be a part of this group while I go through tests.