Last reply 4 months ago
Clinically isolated syndrome

Interested to hear from any of you that have been diagnosed with this, and what your first episode was like. I have ‘scattered lesions’ according to my MRI report but only one ‘prominent’ one that my neurologist is taking into account. I’m into week 9 of some horrible symptoms and finding it hard to see the light at the end of the tunnel as I’m not getting any better 🙁

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stumbler
4 months ago

@caroline_cuddy , a diagnosis of Clinically Isolated Syndrome (CIS) is when you don’t presently satisfy the McDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria) to allow a formal diagnosis of MS. Progression from CIS to MS is a strong possibility, but not definite.

First episodes are unique to everybody. We’re all different and affected by these conditions differently. It’s the nature of the beast.

You can locate other stories about CIS, by putting it into the Forum Search function (magnifying glass, top left).

What you can’t do is allow yourself to get stressed by the situation. This will only make things worse and stall any recovery. You have to acknowledge that, for the moment, you are sick and you need to rest up.


caroline_cuddy
4 months ago

Thanks @stumbler, yes my neuro did explain the diagnosis. There’s nothing to do but watch and wait. I guess I thought I would have been on the mend by now, 2 months off work is taking a toll financially as I had just bought a new house before this all started. So I’m trying my best not to stress but easier said than done… I’ll have a search about CIS


supermum1983
4 months ago

Similar thing had happened to me neurologist said it was ms then they thought it was cis I was fuming. Then after the lumbar puncture and more mri. I was diagnosed for sure with ms.

I’d rather them say anything until the results came back.
I get they have to be very sure but I felt in limbo between that time and had anxiety wasn’t pleasant. Dealing with a relapse as well just no fun. Hope you get the answers you need.


caroline_cuddy
4 months ago

@supermum1983 thanks for your support. I’m sorry you’ve had to go through that. I totally understand they want to be sure before diagnosing… but it also means you’re left to your own devices pretty much unless anything more happens! I just want to get rid of all the awful symptoms I’m having and get back to my life (work, driving, etc!). But all I’ve been told is it’ll get better in time. After over 2 months I worry that how I’m feeling now is permanent 🙁

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