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changed from rrms to spms?

Ive got my yearly app at the hospital on monday just wanted a bit of info off you guys please if poss. Had ms for 12 years now and it was diagnosed as rrms but i feel this has changed now as haven’t had a relapse for over 12 months but loss of sensation in my feet and half way up my calfs and has recently started in both hands aswell. I can’t manage to walk anywhere near as far as i used to and get tired a lot easier now aswell. I was wondering if this mean i have changed to spms and how to i explain this to the nurologist because i don’t fully understand whats happening myself. Jenny.

Hi Jenny

Was d/x in 2005 with RRMS. I was told by my neuro that my MS had progressed from RRMS to SPMS last year because I never have good days now just days where everything is the same and no relapses. When I saw an SPR at my last appt he said that he thought that I had not progressed to SPMS but was suffering from not completely covering after previous relapses. I am confused too to be honest.

Be interested to hear how you get on on Monday.

Shazzie x

I was always told that after around 10 years of RRMS, it was typical to move on to SPMS. That was roughly correct in my case.

I haven’t had a ‘relapse’ for many years, just a steady worsening of existing symptoms and the addition of new ones. (e.g. I can’t walk as far as I could 5 years ago and now need a stick to help me maintain balance when I didn’t need that kind of assistance before.

Don’t know if that helps at all ?

Dom

Hi everyone thanks for the messages. Went for my appointment today and to be honest I still don’t feel any more wiser. I explained how I felt it had changed doc made notes and is going to refer me to a physio but I’m still on the betaferon an they will send me an app in 12 months!!! Then I thought after does it really need to have a title of what stage I’m at i still have MS and I will deal with it as it happens. Jenny x

If you’ve changed from RRMS to SPMS there is really no point in taking DMD’s anymore as they will not help as you no longer have relapses, I have had MS for 11 years and have only just starters on DMD’s but I’m unsure if I have started SPMS as my current relapse just seems to be a progression of my worsening mobility.

The whole concept of RRMS and SPMS is flawed and not to be taken topo seriously. There is no demarcation line. And what type has the person who has say a left leg which may be gradually getting weaker and a left arm which is at times weak but other times normal.