Looking to the future someone with PPMS and someone with SPMS are in the same boat – there’s no difference.
Hi
I would be interested to know if there are any fundamental differences between the two types of MS in terms of symptoms/progression etc.
In my case, the diagnosis hinged on a documented case of ON. Without that in my medical history, the diagnosis would have been PPMS rather than SPMS so not a lot of difference in my case really. If your relapses had been really mild so that you didn’t notice them, does that mean you are diagnosed with PPMS when if the relapses had been more noticeable then it would have been SPMS?
Either way it’s progressive MS. There was an interesting statistic on the Jeremy Vine show, if I remember it correctly (rubbish memory these days) 75% of people with progressive MS will have 3/4 of the disability they will experience after 10/15 years after 5 years. I’d not heard that one before and I wondered how accurate it was. I did know about progressive MS plateauing though, I am still waiting!
Surely, the names tell you what the difference is?
Primary Progressive just gets steadily worse from onset (but the rate of getting worse varies from person to person).
Relapsing Remitting must mean that there is a period of remission between relapses (again with a person-person variation).
Secondary Progressive means that one had RRMS - but now the remissions have stopped, and it just gets steadily worse (yet again, with personal variation).
They must all be progressive - but in different ways (and it is the different ways that people like NICE use to say whether we can have a particular treatment or not).
Forget TV and other media statistics - until you know the size of the population under discussion, most figures are meaningless.
The average life of a heart bypass was quoted at 7 years when I had mine 12 years ago.
MS knocks 5 years off your life - and with the average life expectancy of a male in this country, I died a year before I got MS.
Gosh, I’m dead twice over (if you believe the statistics), so I don’t know who is posting this - must have a look sometime.
Statistics from very small and very large sample sizes are really not a lot of use unless you know all the figures (not just the headline catching one).
Geoff
Hi, I dont think they are the same thing…only variations of the same desease! As far as I am aware, there are dmds to help with SPMS, but none for PPMS.
Im sure if Rizzo sees this thread, shell help out by explaining the differences, I hope.
luv Pollx
Hi Geoff
Unfortunately the names are meaningless. My diagnosis came straight in with SPMS so I was blissfully unaware of RRMS. The only thing that is true of MS is that it is a slippery bugger.
Statistics are statistics I accept that you probably know more about them than I do but they can give an expected outcome though that will not be true for every individual.
Anne
The more experience I have of ms the more anomolies and contradicitons I have found. I know of people with very slow progressing PPMS and people with SPMS who have become housebound in quite a short time and of course I know people with PPMS who are very disabled indeed. Also Benign MS is supposed to be mild and yes people can look ok but can have lots of invisible symptoms.
Everyone is different.
Wendy x
I reckon MS is like the countryside…Parish boundaries,County boundaries, National boundaries, etc only exist because humans say so.The naming of types of MS,criteria for treatment, changing of labels, etc only exist 'cos Doctors,Medical Companies et al say so. I personally believe that ME,MS, Parkinsons and other conditions are all inter-related,but they are placed in seperate categories by doctors because that is the best they can/want to do at the moment.
We each have our own type of MS,but there are very broad similarities with other peples’ versions. After 12 years of the game I have come to realise that there are big National and Regional differences in diagnostic criteria,naming of types of MS,treatments(ignoring the £, $ and ‘Bolotics’) etc and it all appears to depend on the Neurotic and how he/she/it is feeling on the day.
Now, I’ve heard of the Macdonald Criteria,but I’m more interested in a Mac ShergarBurgar at the moment,
Wb
I don’t really know how they can tell PPMS from SPMS… unless of course there have been obvious relapses… but some people have such mild relapses they only discover they have MS with they are SPMS.
I have had many odd symptoms over many years. Many episodes when one of my wrists was so painful I couldn’t use my fingers, or I’d get a very painful hip sometimes… and periods of bad fatigue.
I’m dx PPMS but think it just as likely that I could be SPMS.
This comes down to how the labels don’t mean that much. MS is MS.
Pat x
I think the point is, that no matter what type of MS you have - everyone’s MS is different. There can be broad similarities to the disease, for example lots of PPMSers suffer with legs and bladder a lot as they tend to have spinal lesions but this is not necessarily true of all PPMSers. People with RRMS can be worse off than those with PPMS and vice versa. No one can tell you which one will be worse or better. This just depends on the course of an individual’s illness. I would think that SPMSers and PPMSers have commonalities between them but I bet all of us have varying symptoms. No one can say their illness is the same as another MSers. The one thing we all have in common is that we’ve got the bloody thing! As Pat says, MS is MS. Teresa xx
…only one has its own forum here?
Apart from that i think the main diff is treatments or lack their of.
All of us with ms are “in the same boat”, the fact that we all have ms puts us their. The majority of us with ms have rrms so being told you have moved to another type must be very daunting to say the least.
Darren
Just want to say that anyone with SPMS is more than welcome to join us on the PPMS board.
Pat x
1 Like
Me again.
Just a point about why PPMS has a separate board…I have read in MSS literature, that some neuros thought that PPMS could be a desease of it`s own kind! They also say PPMS is an extreme variety of MS.
I did read a lot about PPMS when I was told I had it.
If I`m wrong, then please ignore this!
luv Pollx
I read somewhere - maybe the MS Trust website - that it is thought that RR symptoms are due to the damage being done to the myelin sheaths. Whereas in progressive MS the symptoms are due to the damage to the nerve itself.
I must try and find the research!
I seem to remember reading that in progressive MS the inflammation gets trapped behind the blood brain barrier. I’ve no idea what that actually means or whether there is a difference between PPMS and SPMS.
Hi Pat, Didn’t know SPMS folk could use the PPMS board, thanks for that. Ng
ninagrace…
you are welcome to use any board-sometimes the most excercise i get is wandering around on here…
ellie x
Thanks for that Ellie…remember the old yellow pages ad…let your fingers do the walking? If only !! Ng x
This is why we should have all 3 main types covered in the forum, cofuses us that we only have one.
I thought the blood brain barrier kept the blood from entering the brain, and only let in oxygen and energy. Like all things ms i new very little before i got it.
Darren