Hi All, hope you are all not too bad today.
I recently spoke to one of the top MS people and he said in his opinion a therapy good for SPMS would also be good for PPMS.
I have always been sceptical there was a difference between PPMS and SPMS, what do you all think?
Thanks
Dave.
Hi Dave, I have always wondered about that myself. Eight years ago I was dx PPMS but at the appointment I told my neurologist about the various episodes of numbness and fatigue over at least 20 years so he then thought it was SPMS.
Reading posts on here nearly everyone with PPMS has had episodes going back years. It’s very confusing don’t you think?
Whatever type I have its not getting any better and is progressing. I just wish I could get something to stop anymore progression. That’s the top of my Christmas wish list.
Mags xx
Very confusing. PPMS or SPMS, it’s still MS. Still progressing at whatever speed it chooses. 
May 2015 I was xd RRMS. Aged 55 and no real lead up to it. 3 episodes of right side paralysis in a week, ambulance, A&E, admitted Saturday morning. Monday morning, diagnosed! On Tecfidera. Twelve months on from that, using a crutch and needing a wheelchair for any distance, Neuro decided it is actually PPMS. At my request, she has continued to prescribe Tecfidera to me, despite the belief that there is no drug for PPMS. Makes me agree with you Dave…sceptical of any difference between them. As you say Ronin, it isn’t going to get better and it is progressing.
According to the Barts Blog it’s the same condition.
http://multiple-sclerosis-research.blogspot.com/2016/10/clinicspeak-what-about-ppms.html
Hi Dave, I believe it’s the same condition…just that us PPMS folk had only mild relapses. Like so many with PPMS I had at least 20 years of symptoms, all put down to anxiety.
At least when diagnosed I could say ‘I told you so’!!!
Pat xx
RRMS, PRMS, SPMS, PPMS,
Its all MS and but they are all only for researchers to write their thesis’ about and as convenient pegs for specialists to hang their favourite opinions on.
Yes, there are differences in treatment as there are in cancer so you can argue the toss about it all day long but when you die because of it, it’s still MS.
Sorry folks, no jokes in this one because I’ve just read what Anonymous’ said about his father exactly five years ago tomorrow and I’m still upset. I wonder how he’d like to categorise Dad’s MS. Not with an alphabet I’m sure.
I’ve just spotted I’ve been labelled as SPMS is a letter so who knows?! My diagnosis was PPMS but I was treated as RRMS when I asked to be referred and went to London. After a year of Tecfidera, I’m back to PPMS and no meds. I’m now certain I had symptoms 12yrs before diagnosis and believe my first ‘relapse’ occurred around 20yrs before diagnosis.
I think it’s the same thing regardless but truthfully I’m a little worried that autonomic nervous system is playing a part too what with recent cardio events etc. I feel a bit passed from pillar to post and I’m not 100% sure anyone really knows
Sonia x
I was originally diagnosed as PPMS, and when I told my MS nurse my legs went numb years ago, the next letter that came and all subsequent ones, have me as SPMS. My legs never got better, by the way, but I was so fed up of being fobbed off by my GP for what I now think were MS symptoms, that I’d just stopped going any more.
I am convinced that MS is MS is MS, whatever supposed form it takes, and I’m with the Barts Blog, that most of us diagnosed with PPMS have spinal lesions rather than brain lesions (I do) and that leads to a delay in diagnosis.
The general MS nurse at one of these information days tried to flannel us that there really is a difference between PPMS and SPMS, but I’m not remotely convinced.
And it’s all academic anyway, last time I looked, your MS will do just what it wants when it wants, it doesn’t conform to a rule book.
Jo x