Newly diagnosed

Hi all

As the title says, I’m newly diagnosed with active rrms. I am on tysabri and have recently had my 2nd infusion.No great improvements to my mobility, yet! I have spent the last 2yrs on a brain holiday as I call it, but I think its slowly coming back to me. Even writing this, would have been something i couldn’t have done a couple of months ago.

thanks for reading

Hello Jacques

Welcome to the forum. Sorry you’ve had to find your way here.

It’s good that you’re straight on Tysabri as it’s a great disease modifying drug (DMD). The point of DMDs is that they reduce the number and severity of relapses. Tysabri has an average relapse reduction rate of about 70%, which is great.

The big problem with Tysabri is that there have been so many stories told of people having improvements in their symptoms, even symptoms they’ve had for years (‘she came in for the first infusion in a wheelchair but now can walk with just a stick’, etc). It gives people an unrealistic expectation, and disappointment when they don’t have active improvements.

But that’s not it’s job. If you have no relapses, and just don’t have any increase in disability, then that’s a massive thing.

So, keep well, if you’ve got cognitive improvement, then that’s a big plus.

Sue

my own cognitive function tends to come and go.

one day i can answer all the questions on tv quiz shows.

the next day being asked for my name and address leads to utter befuddlement.

make hay whilst the sun shines!

show off your cognitive abilities on the days when it is there.

switch to monosyllabic answers when it is absent - duh!

duh! is a useful word.

sorry jacques that i haven’t answered your question but duh!!