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Cis to Cis ?

Hi,

After many months of cis last September, I have now been told my second scan results are…

there seems to be no progression of your disease, both scans appear to be just the same in comparison so you will remain as cis.

ok, So I was told of this by phone call last week. Great news but After a bit of thinking about our conversation I am a bit confused.

by saying to me the disease ( hate that word ) is just the same, does this mean it’s supposed to show signs of getting better?

im really happy of the no progression ie onto to full blown MS happy days for now at least. But should it have shown signs of getting better?

i did express my concern or anger of that, if this has happened once, and from that day I’ve had to stop working due to my physical role and the damage done to my leg plus the ridiculous fatigue. That I recieve medication soon as possible as I don’t fancy another attack!

I have been however passed on to a ms specialist who will look at things further as I wait patiently.

hope all is well

thanks

hiya g

re disease-i get that u dont like the word! is it an illness? for me this is how i got ma heid round it-it may help u-maybe not.

disease indicates my body is not at ease, which it def isnt! words (and the use of them) are important when dealing with this malarkey

is that ur bike? only have use of one eye and cant focus properly on ur wee pic! mine is not my calf but there has been many in my life lol!

ellie

Hello G

I totally understand your frustration. You expect some slightly better explanation than that.

At least you’ve been referred to the MS specialist. Perhaps you’ll get a better answer form him/her. And there are some disease modifying drugs licensed for CIS, so it’s possible that you could be prescribed one of the interferons, or Copaxone which might halt any further ‘relapses’, whether they call it CIS or MS, if you’re experiencing symptoms then a DMD would seem sensible.

If you’ve not seen it before, have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis It has information about the diagnosis of CIS and further down the page, has details about DMDs.

The word ‘disease’ always used to aggravate me too. I’m a bit more relaxed about it now. Ellie’s explanation of dis-ease makes total sense though. As does Ellie generally, though I’m slightly concerned about the number of calves in her life.

Sue

Hi folk, Well I met today with a Ms nurse which was really interesting. But she did have a few concerns around my Continued cis diagnosis, one of which being that… After listening to my symptons journey she is likely of the opinoun, that the chances if this being one episode are highly unlikely. especially as the time between sysmptoms can be months apart. She has also expressed concern that I seek a specialist ASAP to attain advice on the next step. For a one time episode ie cis, she is surprised at the amount of symptons I still currently have even after 6 month. So I need to chase up the specialist who can hopefully move it along. Hi Ellie yes that’s me on my motorcycle only last summer. And thanks sue for letting me know of cis licensed drugs as I didn’t know that. So this will be brung up aswell. Thanks again for the replies Stay safe Glen