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How do you explain CIS to others?

For anyone who has been diagnosed with CIS, how do you explain it to others? A couple of friends know about tests that I’ve had done but I’ve not really told many friends about what’s been happening for the last few months as I don’t really know how to explain it all…I know that sounds a bit silly! I know that I don’t have to share any information with others unless I need to but there have been a few occasions where I’ve had leg weakness and fatigue but I’ve not really known how to explain it so I’ve just been hiding things from friends.

I was diagnosed with rr ms on 23 April this year. Specialist told me you have to inform DVLA, not a problem. He also told me will sort a ms nurse, book appt for continence nurse, book appt for another evoked potential test, all good, no problems. Ring secretary today to ask her to give me some details needed for DVLA, and ask can she send copy of his letter to my doctor, she told me, no you can’t have a copy as specialist didn’t give instructions for me to see letter, and as for the other information the DVLA will have to get in touch with him. I am now questioning as to whether I have dreamed this all and quite shocked by her reactions. Just wondering is the normal, surely if a letter is about me, 8 should be able to see it, if I so wish. Is it normal for DVLA to get in touch with them, but how if they don’t have the details. Does a ms nurse write to you…? He spoke about medication, but only gave me gabapentin. Am I going crazy, what happens next, anybody give me some advice please. Feel I am going crazy, thought I was getting somewhere after two years, was on a high, now in limbo again. Sorry for long post

Make a subject access request to the hospital you had the tests. It costs 10 quid and they are legally obliged to provide you with all medical notes held on you within 40 days. I had mine within a week of making the request and was shocked at the info they had that was not disclosed in appointments or letters.

Sorry Julie.smokey, I meant how do you explain it to friends and family rather than who do you need to tell (I didn’t explain myself very clearly!) but I’m also about to start gabapentin so I’m in the same boat there! Hope that you manage to get some answers and that someone can guide you for the next steps.

Hi Lilly, hope you’re doing ok. I guess it depends whether or not you want to tell them it may develop into ms. You could say you have experienced nerve problems due to inflammation in your brain/spine(wherever it was) and that hopefully you will be ok but are being monitored. If not, maybe just that your nervous system got inflamed which caused you problems with sensation/mobility? Take care

Hi yes it’s awful. I’m having a dark moment so reading some posts and yours caught my eye. I just told my closest friends. People that knew that saw me during my first event told them, if it comes back I won’t be able to hide it. Any one I didn’t want to know I just didn’t tell. Stick to the facts you don’t have ms so don’t do yourself the injustice of suggesting it. I always made a promise not to go on here to often as it was like living with ms anyway reading the stories and some of them break my heart to read and I cry. Just relax about telling people tell who is really important to you and be your friend and then put it to bed and don’t bother telling anyone else. Best of luck take each day at a time don’t pressure yourself over this sort of stuff keep well keep relaxed clear the mind of confusing thoughts concentrate on your mojo. I need to do my injection thinking about bloody ms

Hi Lillypad

This page on CIS from the MS Trust might help you to think your way through the diagnosis and thus help you to explain it to others.

As far as who to tell and who not to, that will depend on who needs to know and who doesn’t. As it may never develop into MS, you may find you just get over this occurrence and go on to think in 5 years or so ‘I can’t believe I went through that awful time, thankfully I didn’t tell many people’.

I hope so anyway.

Sue

I just say that it’s a precursor to MS or singular sclerosis.

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I was diagnosed with ms March 2017- only close friends and family know! I’m lucky that at the moment you can’t visally see problems with me. When I have a problem people can see, I’ll have to deal with disclosing it, but right now, I’m a private person and I’ve chose to keep it to myself. Hopefully by then I’ll be more accepting of this s**t illness anyway and be more confident with discussing it. Maybe you could tell people it’s a bit like a one off ms attack ( more people will have heard of ms) and say say that there is a chance it could develop in to ms though presently it’s CIS. If it were me and a friend were diagnosed with something I’m not familiar with and go away and do some research, so good friends may do that amd familiarise themselves x

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Thank you for the advice, I really appreciate it!

I’m sorry, I’ve just read my post to you in which I said ‘this page from the MS Trust’ then didn’t put the link in. Here it is, https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis I hope it’s of some use to you.

Sue

Not very funny of course but you could say you’ve had a Malfunctioning System I prefer to think of it this way. Hope alls ok though chin up