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How do you define secondary progressive?

I am worsening without a doubt. In a year gone from fit and a runner to cant’t walk unaided and useless right arm. This has happened since June. Just been confirmed that the mental absences last year and beyond were seizures and been having a spate of them recently. I have been diagnosed with epilepsy but neuro wants to find out if it might be MS related. Pat

hiya pat

i know theres criteria that defines it but i think thats just to make life easier for neuros! i told mine last year that he could call it macaroni if he wanted-its only another label. i know it makes a difference to treatment,in theory,but i am not convinced even thats right. we all have our own version to deal with daily so i concentrate on that rather than the label.

ellie x (or is it?! thats just another label given to me by someone else)

I like the label chocorange…my absolute favourite combo of flavours !!

my gran has given me a chocorange every year at christmas for xxxxxxxxx years!

labels-something else to take lightly-i am efficient at selective hearing/seeing now!

ellie x

pat

not odd and i am not shouting! perfectly understandable. but you always have the choice to say no to anything…with or without label.

ellie x

Agree with Ellie…and I’m not shouting either !! Xx

I worked for years with people who have learning disabilities.One lady who has sadly died now was at the forefront of campaigning for equl rights and often said labels are for jars not people.

Thank you but no thanks to the neuro is all thats needed.

I assume you will accept whatever anticonvulsants they offer and then at least if you have side effects you will know what is the culprit.

Pip

Hi Pat, I have found copaxone pretty gentle on my system compared to rebif but I’ve never had Avonex (sounds vile you poor thing!)

I wondered whether I may have tipped too to secondary progressive as I have a steady worsening (very marked in the last year from periods of normal walking to zimmer frame!) as well as relapses and raised it with my Neuro who said he would rather pretend I hadn’t said it cause there is not much he can do to treat secondary progressive but lots of options he can still give me medication wise and into the future with relapsing remitting! So maybe don’t use the the secondary progressive word and just say thanks but no thanks to the copaxone, that way you aren’t putting yourself out of the running for the oral miracle drug (side effect free!) that may be somewhere on the not too far horizon (you never know - fingers crossed!)

good luck x