Neuro letter confusing me.

Everyday living
1

Hi

I was diagnosed with RRMS in September 2015. Today I received a letter saying my diagnosis is ‘rapidly evolving severe multiple sclerosis’.

Is this just a different way of saying RRMS? My MS nurse is not available today or tomorrow for me to ask her.

I do have Tysabri infusions and had 5 relapses in 2015 so I’m not surprised by the word ‘severe’ but confused by the ‘rapidly evolving’ bit.

Thanks for listening to my concerns.

2

I think that ‘highly active and rapidly evolving’ (or words to that effect) is what our RRMS needs to be to qualify for Tysabri. Lucky us, eh?

It’s still RRMS that we’ve got - just that it’s a particularly nasty case of it.

Alison

3

Thank you Alison.

This bloody disease is confusing enough.

I wish it was my memory that was rapidly evolving but instead it’s rapidly dissolving.

4

It is a horrid term, isn’t it? And it is never nice to see these things written down - even though they are just technical terms, they do have a discouraging ring!

Alison