Hi everyone!
I’m completely new to this world and have been thrown in after a random find and an MRI. I went to the opticians with eye pain and a headache and they found a visual defect, so I had an urgent MRI and they have found a high signal white matter lesion. So I have the dreaded wait to see a neurologist- they have suspected MS but obviously doing lots of googling and I am yet to be convinced due to only finding one.
If anyone is willing to share - I am keen to hear other experiences around quick and unrelated illness leading to MS? 
1 Like
Hi @jasmine, hope you’re holding up (especially if it’s as hot where you are in the world - I’m a puddle of sweat!).
So sorry to hear this has been thrown upon you so suddenly - must feel very alarming and out of the blue to find out there’s a lesion in your brain after eye pain. I wouldn’t expect that at all after a trip to the opticians.
My symptoms were super different (numbness etc), but do relate to that feeling of being thrown by MS as a possibility - not one that I’d come across just from googling what I had initially either! Good that you got the urgent scan and hope you’re having a positive experience with medical teams at he moment?
Really hope you get results and answers very soon. How are you feeling?
Same. Optic neuritis in 2020, MRI showed only one lesion in the brain. After a second relapse in 2022 (numb hands), I received MS diagnosis in 2023, and they found more lesions in the spine.
Hi @mackenzieblackman
Thank you for your message, I am also a puddle of sweat in the south east of England!
I haven’t really seen many professionals yet, my GP is absolutely amazing though! I do get numbness in my hands and feet but I also have Raynauds so it can be so hard to work out what symptoms relate to what!
How far are you in your journey?
1 Like
I’m sorry to hear that @MariaB123
Did you have many other symptoms? I have heard that MS can take years to diagnose due to needing relapses of symptoms, I’m quite thankful that so far I can only really think of one episode so I’m remaining positive 
I’ve had the optic neuritis in 2020. My eye took about seven months to recover. I have only recovered about
seventy percent of my vision. In fact, I struggle to type this on my phone, so excuse the language, I dictate. When i had optic neuritis I also had weakness and twitches in many parts of my body. My two pupils stopped working in a coordinated manner.
Then in 2022, both my hands went numb. They stayed numb for 9 months. I also had weakness and twitches. Also, issues with tinitus and hearing everything way too loud.
I am taking plegridy now.
M
1 Like
Not a nice worry to have to contend with!
Obviously on this forum, you are going to get people who had e.g. optic neuritis and then went on to get MS (it’s an MS forum, after all)… you won’t hear from people who did not in fact get MS. So we’re a bit of a biased audience.
If you just have the one lesion though, that’s really good news. It means that even if you do have MS, or “clinically isolated syndrome” (CIS = one off episode), it’s been caught really early and by getting on treatment you can fight back before it does more damage.
Have you come across the Macdonald criteria? That’s what they use to diagnose MS. They used to require lesions in two different places I think (so not just the one), but the criteria are updated regularly.
There’s also a useful video on the MS Trust website for people going through the limbo of the diagnostic process.
2 Likes
Wow! That sounds like you’ve experienced a lot! You’re language is absolutely fine and is coming through absolutely fine - it’s good to hear technology is able to support you.
It’s so difficult with MS due to the variety of symptoms, but I hope you feel well as much as you can.
Jasmine
Hi Leonora,
Thank you so much for your reply, that’s really helpful! I have not heard of the criteria or CIS so I will definitely look into the MS Trust.
Completely agree with Leonora - this forum will definitely be skewed towards those who did eventually get an MS diagnosis! I met a friend of a friend recently who still has ‘clinically iscolated syndrome’ i.e. a one-off episode about 5 years ago - didn’t get into the specifics of his symptoms etc, but sounds like he’s doing very well with a few MRI scans every now and then, but nothing else has turned up.
I did recently get an MS diagnosis (unlike you, I had a lot more lesions in my brain as well as spine), but feeling very lucky that it has been caught so early (especially with so many really effective treatments available). I had quite a straightforward diagnosis journey, too, which has made a tough time a lot easier. I’ve had a lot of friends really put through the medical rigamarole.
It sounds like you’re in a good position and things have been caught early on, although imagine it doesn’t feel like that since of course ideally everyone just wants a clean bill of health. Take care and do shout if you ever have any more questions.
I agree too!