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Clinically Isolated Syndrome

Hello.

Going back in June I was told that I had CIS following an episode in which seen me losing feeling in my left side of my face and arm which lasted for around 30 plus days. The MRI scan showed that I had mutliple lesions in my brain and spinal cord which are an indication of MS.

My neurologist was concerned that due to the number of lesions found that I was at a higher risk of going on to develop MS. The news hit me for six and I have somewhat struggled to get my head around it all.

My MS nurse offered me a follow up MRI with contrast which I had a few weeks ago. I have received the results and it is good news as there have been no further lesions found in a 6 month period.

What I am now struggling to understand is that no-one wants to see me and was told that no further action will be taken unless I experience new symptoms.

Is this normal? If I am being told that I am at high risk of developing MS would they not look to monitor this?

I am not aware of what symptoms I should be looking for so would not know.

I am sorry if I sound ungrateful that it is good news. I truly am but still also feel a bit in limbo. I want to make sure that I can do everything possible to remain healthy.

Any advice is welcomed.

Emma

Hello Emma

It must be so worrying to be thinking that any minute you might develop MS. But the good news, and what you should probably cling to for reassurance is that right now you don’t.

Have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis What the info page does say is that early intervention with disease modifying drugs is often seen as a good idea, your neurologist clearly doesn’t think you should be taking any right now. It’s possible that if there had been any change on the MRI that s/he would have recommended DMDs.

Symptoms you should be looking for are essentially those of a relapse. Again, the MS Trust has a handy fact sheet: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/relapse So if you get any relapse like symptoms, then get onto your MS nurse.

Meanwhile, if you remain relapse/symptom free, then try your level best to put the spectre of MS out of your mind. Basically accept that you’ve had an episode of CIS. This may lead on to MS at some random point in the future. But that point could be months away, years away or never.

So enjoy your Christmas being glad you’ve not got MS rather than worrying about getting it.

Sue

I’m also CIS but until recently was on Rebif (off at mo due to low white blood cells). As Sue said, current recommendations are early treatment with DMTs to delay conversion to MS. Recent changes to the McDonald criteria mean earlier diagnosis with MS if LP positive. Have you had an LP? Mine was positive for oligoclonal bands which puts me at higher risk so maybe that’s why I was offered treatment. My brain showed 2-3 possible lesions and VEP/SSEP were normal

My neurologist did say to live my life so I do try not to stress too much about what might be - not easy at times though! Stress isn’t great for MS. What symptoms do you have now?

Thank you for your advice. Apart from fatigue which I have suffered with for years I dont seem to be experiencing any further symptoms at present which is great. I have not had the LP yet. You are right though Im going to try and forget about it for now. I was told that I would not be offered DMDs unless I was diagnosed with MS. Thanks again