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Diagnosed with CIS

Hi I’ve been diagnosed with CIS in 2013 and continued to have symptoms.My symptoms are getting worse. The Hospital done another MRI I only have lesions in the spine and not the brain. Hence that’s why they labelled me as CIS. I’ve told them my symptoms are getting worse but they’ve just told me to carry on. They’ve not given me any medication. I’ve just come down with this flu which have made my muscles weaker. I’m struggling to walk. Can anybody give me advice way to do. I’ve also been diagnosed with meniere diseases aswell.

hi

surely you should be allowed some medication.

after all, the policy now is to hit it hard and early.

CIS sounds like ms in waiting.

good luck

carole x

Keep going back, all the time to the GP. Even on a weekly basis, with a list of your symptoms, how they have changed, each time even if you don’t look ill, make yourself look ill! Sometimes it is the only way for the system to flag you up as needing something more. I think they see M.S. as a long term thing, so tend not to react quickly to things unless they know repeatedly how it is affecting every day life. Keep going and keep going.

The flu may do you a favour in the fact that you can go back after it to the GP and say, since the flu, your symptoms have increased by 20 times and list the things you are now unable to do. Make them see it is a practical thing i.e. I cannot peel spuds, pick up saucepans, walk upstairs that type of thing, sometimes it is the only way. I said to my GP once years ago, if you don’t do something for me today I am going to tie myself to your table. He knew I was serious then. I had to really convince him because I am lucky or unlucky enough that when I am very ill, I look ok most of the time so they just look at you standing and sitting and conversing and think you are still ok. Its all a long game, but the day to day problems still need sorting out. Have you had someone from O.T. come and assess where you live? A very useful lady came here, looked round, I asked her to list all the things I may need in the next years if my symptoms increased etc worse case thing, she showed me pictures, told me what I should have now (high toilet, grab rails) and listed with codes and prices what I might need and where I could get them from. Now you can hardly see special things in my house, but in every room there are hidden openers, non spill large cups with straws, grabbers, twisters, especially in the kitchen. The best thing I ever bought to help me when I couldn’t lift the kettle was a one cup boiler. It has made my life much easier.

I think once you feel a little better, if you haven’t already, get someone in to look at the things that we are not trained to see. Have a look at your surroundings, where the furniture is, your bed etc. see if there is anything you can do first to help your environment to be easier for you.

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