This Is MS Multiple Sclerosis Knowledge & Support Community

Posted: **Sat Jul 28, 2007 10:01 pm**

Here is an interesting overview of PPMS:

http://www.neura.net/channels/1.asp?id= ... ps=0&cpp=0

Posted: **Sun Jul 29, 2007 6:32 am**

Very informative article, dignan. Thanks.

gwa

Posted: **Sun Jul 29, 2007 7:50 am**

Great find dignan! I love it when researchers FINALLY start coming to their senses!

article wrote:These observations suggest that the course of progression in MS was independent of relapses either preceding it or superimposed on it,4 a dissociation that has led to the suggestion that PPMS may simply be MS with the common relapsing–remitting phase “amputated.”3,5

Or that the relapsing/remitting phase (and damage progression) was mild enough that plasticity was able to successfully mask it, therefore wasn't "diagnosed" until the progressive phase........spms/ppms.

Bob

After reading the entire article I retract the above statement. They're comparing rrms/ppms and these researchers aren't even listening to themselves talk.

For the entire cohort, mean age at PPMS onset was 38.5 years, a full 10 years later than the mean for RRMS.3

If only researchers would listen to themselves and pay attention. Let's see....50% of people diagnosed with rrms progress to spms in 10 years.

For the entire cohort, mean age at PPMS onset was 38.5 years, a full 10 years later than the mean for RRMS.3 However, mean age at onset of progression in the general MS population was 38–40 years,2 indicating that later onset of PPMS could be attributed largely to the absence of a relapsing–remitting phase. Similarly, progression occurred more rapidly in PPMS compared with SPMS when measured from disease onset, but progression to Disability Status Scale (DSS) 6 and DSS 8 was actually more rapid in SPMS patients when rate of progression was measured from onset of progression. Rate of progression to DSS 10 (death) did not differ between PPMS and SPMS.3 These observations suggest that the course of progression in MS was independent of relapses either preceding it or superimposed on it,4 a dissociation that has led to the suggestion that PPMS may simply be MS with the common relapsing–remitting phase “amputated.”3,5

THAT is the information someone needs to base a comparison of ppms/spms. And someone paying attention to the statistics would realize that spms and ppms are the same thing and in ppms the rrms phase is invisible/overlooked.
Bob

Posted: **Tue Jul 31, 2007 8:40 am**

Or maybe like me the rrms phase is treated as "attention seeking behaviour" and you begin to think that you are a hypochondriac, so stop even going to the doctor. Being patronised is not a pleasant feeling is it? When the diagnosis of "progressive" MS was finally given to me many previous episodes could be seen as relapses followed by remission.

If only GP's actually bothered to look at our histories I suggest that many more people would be forewarned and/or treated early. Is it obvious that I am annoyed

Posted: **Tue Jul 31, 2007 11:55 am**

speedbird wrote:Or maybe like me the rrms phase is treated as "attention seeking behaviour" and you begin to think that you are a hypochondriac, so stop even going to the doctor.

THAT is a really good point I hadn't considered. Thank you! Probably a lot of people who go through an extended period of "limbo" are ultimately diagnosed with PPMS or SPMS, only depending on whether the medical staff looks back on the patient's history of complaints to determine the PPMS/SPMS designation.

Hopefully as the higher Tesla MRI's are phased in the less distinct lesions will show up and less and less people will have to endure limbo.

Bob