Something to ponder -MS stat

[Lulu54]

The Fall 2010 issue of Momentum, the magazine put out by NMSS, has its usual interesting articles, but what really caught my attention was the closing column on the very last page....

The NMSS had polled its readers to identify priorities and Joyce Nelson, President of NMSS, wrote about the three that really stood out - more research, more MS doctor/researchers and  

"More support and more visibility for those with progressed forms of MS.  Nearly 50% of people living with MS today have secondary or primary-progressive MS. "


I have never heard this statistic and wonder if any of you have?  I've always placed RRMS as the majority when it comes to classifying MS.  

-Lulu

[Eyesnlegs]

Very interesting discussion.

Can I also add that as some with SPMS still continue to have relapses but do not recover between as well as they did - this further confuses the issue.

Pat

[Sailorsong]

Mary,

   That makes sense to me especially since I have had symptoms since 1989 ( 21 years). It was about 2 years ago I think ( i have a lot of trouble with time frames) that my Neuro notes in my records that he believes I had RRMS which has progressed to SPMS.

  Also of note is that for the last few years I have noticed that with each flare up I have it never seems to get that much better ( it becomes basically my new normal). Much like what that article talked about.

Dennis

[twopack]

I've seen that same sort of statement other places Dennis.  A neuro at one of the drug company sponsored seminars I attended (it may have even been my own doc) said that once someone has had RRMS for twenty years it can be assumed they have progressed to SPMS.  That comment stuck with me because I was officially diagnosed last year but the doc showed me lesions he saw on a 1990 MRI I had done (right again Dennis).

I think that there is still so much NOT known about MS and people with undiagnosed MS-like symptoms that all these types of number predictions are meaningless - except to know that we have loads of company.

Mary

[Sailorsong]

I found this which I think answers your question.

"SPMS is characterised by a steady progression of clinical neurological damage with or without superimposed relapses and minor remissions and plateaux. People who develop SPMS will have previously experienced a period of Relapsing/Remitting Multiple Sclerosis (RRMS) which may have lasted anything from two to forty years or more. Any superimposed relapses and remissions there are, tend to tail off over time."

The full article is located at:

http://www.mult-sclerosis.org/secondaryprogressivemultiplesclerosis.html

Dennis

[Lulu54]

Again it begs the question - when does RRMS stop and SPMS begin?  

-Lu

[HVAC]

I have heard different MS Specialists in talks for the NMSS say most RRMS patients will end up as SPMS.  So add those with PPMS and this statistic makes sense.

The purpose of the statistic, in my mind, is to say there are still a lot of people with MS for whom the progression can not be halted by the current treatments which have not even been around two decades.

The focus is on DMDs and RRMS most of the time.


Alex

[figuerpa]

That seems to be a very high percentage. Everything I have read or seen says that a majority of people with MS has RRMS.

I signed up for the magazine, but am still waiting for delivery. That is a very scary statistic.

Paula

[Sailorsong]

Actually the stat kind of makes sense at least to me. When you consider all of the "probable MS" people out there that get no DMD it kind of figures that by the time they get a DX their RRMS has probably progressed to SPMS.

Dennis

[Sarahsmom46]

I must have missed that last page.  That is an amazing and surprising statistic.  Like you, I believed that RRMS would be the highest percentage of people with MS.

I read in a research finding today put out by NIH that only 10-15 percent of people with MS had PPMS (didn't mention SPMS) and seemed kind of low.

There are many people who are not even told they have RRMS by their neurologists unless they specifically ask for the type of MS.

And for those who have had MS for a long time may no longer be going to the neurologist on a regular basis since they don't feel the need to see one regularily anymore are maybe self diagnosing progression.  

Again, this is an interesting stat and even more interesting if it is in fact accurate.  If so, then someone needs to update the medical journals.