Terrified of MS diagnosis

[nowandnever]

Hi - I had an episode of double vision recently, lasted about three weeks and coincided with my first Covid illness, so eyes at hospital put it down to likely that, CT was normal. I've since had an MRI (which I paid for privately) indicating the symptoms were probably caused by small inflammatory changes in brain with (possibly an old) lesion
I've been given a diagnosis of CIS (clinically isolated syndrome) based on that and told that it is probable that it will progress to MS. I've been referred for consideration of immunomodulators.
I'm 44. I'm asymptomatic otherwise (though of course I'm scouring my brain for any times I felt tired, or too lazy to walk or my foot fell asleep)

I'm absolutely terrified, as I feel like a ticking time bomb now. Anyone any ideas how to cope, or any experience with this?

Oh, @nowandnever — try not to worry, even though that seems impossible.

I have a very dear friend, 63, who’s had MS for most of the last 35 years or so. She has assured me (over & over) that it hardly bothers her. She says that when she gets over-tired, her foot drags a teensy-tiny bit, so she makes sure to never get over-tired.

She says she really doesn’t have any other symptoms. I know in the beginning, a few strange and bizarre things happened and she was bewildered and scared just like you are — but once she got a diagnosis and got established on medication (sorry, I don’t know which medication), she enjoys a perfectly normal and happy life. Just like you will.

Please try and not freak out before you have anything to freak out about. Try to think positive and think good thoughts. Remember that MS is not a dead end or a life sentence. It’s just a bend in the river that you didn’t expect. Meet this as a challenge not as a defeat, okay?

You’re a lot stronger than you give yourself credit for — and as you’re about to find out. And who knows? You just might kick MS’s ass instead of MS kicking yours. And it might be Mother Nature trying to scare the shit outta you and could be hardly anything at all.

In any case, I believe in you and you’ll be grand. Now you need to believe in you. I’m happy to get in touch with my friend on your behalf. She’s an absolutely lovely girl who’s dealt with MS and done beautifully, just like you will — IF, indeed, that’s what you have.
Chin up, ok? Everything will be okay, I promise. ❤️ I’m always here.

The truth is no one knows what will happen in their future.

Your private MRI has given you a diagnosis, that you wouldn't get off the NHS without two or three 'attacks' of symptoms. So I wouldn't worry until/unless you get to that level of symptoms.

If you develop MS you might go though life untouched or you might have more problems to deal with. But the bottom line is you will deal with it whatever happens, as you have no other choice.

I hope for your sake you get no further attacks.

To give another side to it, I have ms and it’s not too bad. Ive had it years, mine is highly active - if I’d had a diagnosis within my first symptom AND put on the medication that is available nowadays, perhaps I wouldn’t be using a stick now. This is coming across clumsily but what I’m trying to say is that 1) ms is ok and 2) this is a great time to be diagnosed as the medication available is amazing. I’ve been on Tysabri years and haven’t progressed further. PM me any time