CIS
Hi guys,
I’m new to the group my husband found you on Instagram. Last week I got a phone call off the neurologist telling me my mri has shown lesions on my brain and spine and due to my symptoms that prompted the referral from my GP I have now been diagnosed with clinically isolated syndrome. However he said I don’t have MS at the moment, if I have another episode like my previous one then I will be given the diagnosis of MS. As you can imagine my husband is looking on the bright side saying you don’t have MS that’s good, and you may never have. However I feel like a ticking time bomb of if and when I have another episode my current diagnosis changes. Is anyone else in this situation, I’ve never heard of CIS until now. Thanks in advance for reading my ramblings x
Hi there. I don't want to dampen your husband's optimism but we all start off with CIS and generally it is then an individual path to being diagnosed with MS. MS is a funny one in that it is totally individual to each person. You can have two people with MS, one can't walk and needs a mobility scooter and all kinds of living aids but then you meet the 2nd person and genuinely wouldn't know there was anything wrong with them. If you want to push the situation then try asking for a lumbar puncture which cabn give a definitive diagnosis otherwise it is a case of waitng for if and when another relapse happens and then you can get a full diagnosis. I found it hard when told I had CIS and pushed hard for a lumbar puncture which they carried out and this confirmed I had MS which strangely I found easier. Anywany, welcome to the club!
@Karenlou83 Hi in order to be given a diagnosis of MS no matter what name they want to give it. You have to meet the standards in the link below, they haven't done a lumber puncture so can't say what you have with any certainty. Time is brain in this game, don't be fobbed of by a know all doctor they really don't. https://mstrust.org.uk/a-z/mcdonald-criteria