Last reply 1 month ago
Might have Clinically Isolated Syndrome

Hey 👋🏻
Hope we’re all doing well in isolation ☺️

Following on from my last post 2 months ago, I’ve received some letters telling me that my MRI was clear and that my MOG antibody test was negative – which is good because that means no new disease activity 😁
However, the MOG test was going to make the picture a little clearer if I had tested positive, but now I’m just as unsure as I was 10 months ago when my symptoms appeared for the first and only time…

I’m starting to think that – because I have only had one episode of symptoms and my MRIs don’t meet the McDonald Criteria – the Doctors might have gone 1 step too far and started to investigate me for MS when it actually looks like I have Clinically Isolated Syndrome.
Anyone got any similar experience or advice on what to do next?

All my symptoms lasted about 8 weeks and cleared up entirely after steroids. I have been absolutely fine since. I’ve searched the forum for more CIS stories but couldn’t find anything quite the same.

Thanks again folks, keep smiling ☺️

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1 month ago

@keepsmyelin99 , check out this post :-

especially the last update/link.

1 month ago

Thanks @stumbler ☺️

1 month ago

Same happened to me! After leg symptoms scan came back all clear. They took a wait and see approach. Low and behold less than a year later I had another relapse and was diagnosed.

1 month ago

I was first diagnosed with CIS, but it was also RIS (Radiologically isolated syndrome) because there was a lesion on my spinal cord – they took a “Let’s test him for everything because this is getting worse!” approach with me and it took years to actually arrive at the conclusion of MS – which my neuro says is still technically up for debate, but my 2 lesions are multiple sclerosis by defintion of being more than 1.

Took 5 years for me to be diagnosed, though MS was always on the table.

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