Hi all I was dx this year with RRMS and I’m just wondering how many of you had RRMS and now gone on to have SPMS? Thanks, Emma xx
Emma, l expect many PWMS - are now SPMS - l have had MS for 30yrs - and mine has always been SPMS. l started taking LDN about 3yrs ago - and thankfully have not progressed since then. Wish l had known about it years ago as l have never been offered any other treatment - just left to get on with it.
F.
i went on to spms from rrms 13years after i was diagnosed.
Hi Emma. I was “upgraded” from RRMS to SPMS recently, however apparently the ms team knew I had this form long before they told me!! So unfortunately I cant say exactly when this happened. I was diagnosed in 2005 with RRMS. In truth I knew it was getting worse, probobly me in denial!!! Take care of yourself, I know its hard, but try & be positive, only way I can get my head round it Tracey xxx
I’m in this situation, was about 2 years from my diagnosis of RRMS to being changed to SPMS (diagnosis took 1 year from first relapse). To be honest I wonder if I ever had RRMS and think I may be suffering from the rarer Progressive Relapsing MS as I have been getting worse between relapses ever since I was diagnosed with RRMS, my MS nurse says that neuros are reluctant to characterise someone with a rarer form of MS since a lot of treatments are not approved for them (not that I feel anything I’ve been given helps much apart from the IV steroids during a relapse).
I never had RR. After a first quite debilitating episode I had no change for about 12 years then started going downhill. My notes say SP, although strictly speaking I probably had PP all along. Call it what you will, it doesn’t change my day to day life.
I have been SPMS now for the last couple of years (supposedly!!)
I was originally diagnosed in 2004 with Primary Progressive MS. I queried this diagnosis around 2007 after having a few noticeable relapses and my neurologist said he would ‘tweak’ my diagnosis and for the next three years my notes stated I was Progressive Relapsing MS!!
By 2010, after my usual review my notes had suddenly changed to Secondary Progressive MS and that is how they have remained since.
I don’t worry about the label anymore as I don’t think they really know 100% what type we are.
Dawn
Hi Emma I was diagnosed with rrms in 2000 and was told about a year ago that it was now spms. However, I am still having really bad relapses so neuro now says I am rrsp - didn’t know you could be rrsp but I am apparently. I am now in a wheelchair full time and need food cutting up for me. No longer able to drive or sign my name but hey I am fit enough to work apparently. Atos performs another miracle! Hallelujah. Had another fall this morning. Was able to haul myself up this time after 20 minutes on the floor. Better than last month when I had to call the police (in case they needed to kick the front door in cos I was alone in the house and neighbour who has a spare front door key because i fall frequently was not home) and an ambulance because I was injured. But hey ho its good to know i am now cured cos Atos say I am…!?! Sorry, sounding really pis!!!d off but can’t help it. Tracy
Hello Emma
My husband was initially dx RR, but went on to SP after 5 years. To be honest I think he was probably RR since dx, but I think that with hindsight which is a wonderful thing.
Most people with RR will go on to have their MS classified as SP after 15 years or so, from what I have read. However I think MS is MS. In all probability there will more dramatic treatments and who knows even a cure that you will benefit from in your life time. So I would not worry about the future, just make the most of what you can do now.
Regards
I was diagnosed with RRMS back in 1999, after initial major relapse in 1998.
It’s now been re-evaluated as SPMS since 2009, as there is no longer any period of remission.
A cure would be fantastic, if one is found?!!!
Hello,
First relapse in 1977, diagnosed with RRMS in 1994, turned to SPMS in about 2000. For a long time thought MS was benign but not anymore, its very evident now
MS had no effect upon me apart from initial relapse until 1999. diagnosis was because I reported double vision but that sort of got quiet and unobtrusive.
As far as I’m concerned its MS and always has been, just gets worse and worse
Thanks,
Patrick
I was diagnosed September 2001 with RRMS and was bumped up July 2008. Apparently by THEIR parameters it might have been going on two years earlier but I was under a neuro away from the specialist unit,and he knew ef all about MS
When I WAS told the news I was given half of my lifetime allowace of MITOXANTRONE,then put on Copaxone which did nothing to stop me ‘abseiling into absurdity’ over the next 12 months.I cacelled the Copaxone and am still waiting for a £12K cheque…The money I’ve saved the NHS.
As far as I’m concerned I have MS and THEY change the label when things meet their criteria
Wb
Ho Dx 2002 with rrms and still the same. Neil
hi emma
i was diagnosed in 1998 with severe RRMS. i had,however been getting relapses(i know that now,but was scary as hell at the time as i had no idea what was wrong. didnt help that my GP at the time had not believed a word i told him,so wouldnt help me) on a regular basis. when u r not diagnosed they wouldnt treat me with IV steriods.
i moved,and had another episode(had moved from glasgow to east yorks,very stressfull,lol) and was referred to a neurologist,and 3 months later was diagnosed.
ive not had a relapse in 6 yrs(but have had symptoms that suggest relapse,and it peters out without an actual relapse) .
im on beta-interferon 1a,and it did me wonders. i had relapses,but not as often as i did b4 the beta-interferon 1 a. b4 i had this drug i was getting relapse within a few months of a previous one! therefore no IV steriods,even tho i was diagnosed!!
i have my suspicions that i may now be SPMS? none of my specialists have said anything,so i dont know,lol. i think ill be taken off the beta if that is the case…
try not to stress too much,take care
lynda x x
Thanks guys. I’ll try not to worry to much about things and live day by day xx