Forum

RRMS or PPMS???

Hi, I have been diagnosed with Rrms but… I find I am getting progressively worse. Compared to when I was diagnosed in 2009 I am so much worse. Is this normal with rrms? Anyone going through a similar problem? Dan

Hi Dan… did you have relapses to start with? In other words, did your MS start with definite attacks when your symptoms were bad, and then things improved a bit for a while?

Some people with RRMS start off by having relapses, but then things start to get progressively worse. That’s when they have developed SPMS… or Secondary Progressive MS. For some people that happens after many years of RRMS… but for others it can happen quickly.

(Forgive me if you already know this stuff… )

PPMS is progressive from the get-go. There are never relapses and then remissions, although things can vary from day to day.

Are you seeing a neuro? If so I think you need to go and discuss it to see what’s going on. If for any reason you’re not seeing one, ask your GP for a referral.

Have a look at the ‘What is MS’ bit at the top of screen which has a bit about ‘types of MS’.

Hope this helps. Very hard when things seem to be getting worse Dan so I know what you’re going through.

Pat x

It started when I used to get blurry vision whilst playing football. Not relapses as such just progressively worse which is why I am confused I will discuss this with my neurologist Thanks pat

Yes Dan, discuss with neuro.

Sometimes it takes ages for them to figure out what type you have… and not that long ago there weren’t ‘types’ at all… there was just MS… so don’t stress on what type it is.

Put it this way, aggressive RRMS is much worse that slow progressing PPMS… so don’t think that PPMS is necessarily the worst MS.

And also just because you have had progression doesn’t mean it will continue. IF you do have PPMS it can stop progressing or slow right down.

Hope this helps. I’d be interested to know what your neuro says,

Take care,

Pat x