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Hello to everyone!

Hi Everyone

My name is Laura and turning 31 next week. I’ve been having tests since 2018 and after finally getting a second opinion with a new neurologist end of last year, who is absolutely amazing, I’ve been diagnosed with Clinically Isolated Syndrome. After discussing my case with the board they’ve unanimously agreed that I most likely do have MS, I just don’t meet the full criteria for diagnosis. They’ve agreed I should start medication now as I’m getting recurring and occasional new symptoms almost on a fortnightly basis, thankfully minor ones! I’m hesitant on going on medication as it’s accepting there is something wrong but I do know the quicker I go on it, the less damage there may be later on. Just need to get my head round everything I guess.
My mum was diagnosed when she was 50 and my symptoms pretty much mirror hers at the moment which doesn’t usually happen so it’s an odd case according to my neurologist! Unfortunately my Mum is under Buckinghamshire and my second opinion with a brilliant neurologist is under Berkshire so they can’t really look into it at the moment unless she changes herself too. Sorry for the longer post, just wanted to say hi as I’ll probably have a lot of questions over the new few months! Thanks for reading my rambling!

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Hello Laura

Welcome to the forum. It sounds like MS has been in your life for a while, not only the time it’s taken for your own diagnosis, but having a mother with MS too.

I must say, I think it’s a weird world when the medical professionals agree that you:

but they can’t call it that and get you started on a better drug to prevent relapses and the severity of them.

You are quite right that starting a disease modifying drug (DMD) is sensible. I can also understand your reluctance to ‘accept’ the reality of the diagnosis. Once you’ve got your own head round it, have a look at MS Decisions aid | MS Trust and maybe a chat with your mother.

Best of luck. Don’t be nervous about asking us for help. We’re happy to share our own knowledge and experience.

Sue

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