Last reply 1 year ago
CIS?!?

Hi,I posted way back in Dec after receiving my LP results trying to understand the inflammation bit…and waiting for my Neuro app.
Well the app came and went(Monday)and the consultant has said I have CIS, after
coming to the conclusion after having only 1 episode of right sided facial numbness and 1 MRI which showed a white spot and now of course the LP results!So after sitting and thinking and trying not to Dr google I’m feeling a bit like a walking time bomb..
He did say that there is no way of knowing if and when another episode will happen but I am in the 70% high risk!
I’ve got another MRI booked in for June so it’s going to be a nervous wait till then!
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bloomers1968
1 year ago

calm down and ignore history unless you have another incident, dont panic about what if ? you will drive yourself mad if you do


stumbler
1 year ago

Hi @sarah1972, this diagnosis means that you don’t satisfy the McDonald criteria for a diagnosis of MS (https://www.mstrust.org.uk/a-z/mcdonald-criteria).

The following guidance includes a section on CIS, which suggests that Disease Modifying Treatment (DMT) can be considered, with a couple of conditions :-

http://pn.bmj.com/content/15/4/273

You may want to discuss this with your Neuro……………..


sarah1972
1 year ago

Hi and thankyou bloomers1968 for taking time to read and reply… worrying and panicking about what could happen I no is futile.I am trying not to dwell on it tho but I’m a worrier! Thanks again.
Sarah


sarah1972
1 year ago

Thankyou stumbler, the Neuro said there wasn’t anything medication wise to give at this stage as all had strong side effects and basically to sit and wait to see if it happens again. But hopefully when I have my next MRI and follow up app I will see what he says. Thanks again.
Sarah


smurf69
1 year ago

Hi Sarah, I’m currently CIS as don’t meet the multiple criteria to be diagnosed. Have 2-3 possible brain lesions plus positive LP. Symptoms since June last year are altered sensation in arms/hands/feet but mainly when laying down. Did have 2 MRIs 3 months apart last year and the 2nd MRI was unchanged from the 1st.
I’ve been offered DMTs and am due to start Rebif on Friday. It was left entirely up to me whether I opted for treatment or not though with no real support or guidance from either neurologist or MS nurse. Having researched things though, I came to the conclusion that treatment was recommended for CIS. As you can tell, I’m new to all this too. I’m not saying that you should be treated as you might be at low risk of conversion to MS and the treatment has side effects. If your symptoms have resolved and you’ve only 1 suspicious area on MRI, try and carry on with your life until your next MRI and follow up appointment.
The one thing that I have remembered that the neurologist said was to carry on with my life as planned and not to let this stop me doing things.


sarah1972
1 year ago

Hi smurf69, thankyou also for your insight and advice,The Nuero as I said in my post wasn’t really up for giving much away during app in fact it was me that mentioned CIS to which he nodded… I just can’t shake the uncertainty off, I’m having sensations more or less all the time but the ones that concerned me (warm burning feeling in thigh) he couldn’t say much about.
As for medication I will mention it again but at the app he wasn’t really offering anything other than saying about the side effects.
But I’m going to take the ever so optimistic approach as life is so precious and to continue the best I can to try and be positive! It’s just such a long journey through the never ending episodes of limbo land!! Many thanks again..
Sarah.

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