MS Progressive Types: Primary Progressive and Progressive Relapsing

Ken
Ken tells the story from a different perspective because the PPMS in his life is that of his wife, Marg. It begins with her diagnosis following a series of strange symptoms. They spent the next decade traveling around the world and have now settled down.

Mimi
Mimi's story on WebMD tells about preparing for tomorrow with PPMS.

These stories make it clear there is still life after an MS diagnosis, even if it is for Primary Progressive. Often the progression is very slow. Though there are no remissions, but there are often plateaus of little or no new or worse symptoms, and these may last for months or even years.

Progresssive Relapsing (PRMS)

Between 2-5% of MSers have a steady progression of neurological damage accompanied by periods of relapse, possibly followed by significant remittance. There are two paths to diagnosis for this rare type of MS:
   1. It looks like Relapsing/Remitting, but there is accumulated damage between relapses.
   2. After a diagnosis of Primary Progressive MS, a relapse occurs and the diagnosis is changed.

Because of this, it is often misdiagnosed, and that is understandable. Essentially, PRMS is Primary Progressive, but with relapses.

A period similar to the Progressive Relapsing type may also ease the change from Relapsing to Secondary Progressive. The Relapsing MSer does not go to bed one night and wake up with Secondary Progressive the next day. Instead there is a transition where symptoms progress but with clear relapses. This description is the same as Progressive Relapsing, but here it was preceded by RRMS.

There is steady progression of functional loss and neurological disorder in both Primary Progressive and Progressive Relapsing MS. These MSers often feel left out in the cold by the medical community. The stories above remind us of how important it is to maintain a high quality of life while living with MS.

Shelley Peterman Schwartz reminds us that for MSers with Primary Progressive "...life will continue to go on in a positive way as long as they have a positive attitude..."

Mimi Mosher says

"accept progression while struggling against it;

find peace and gratitude with what you've got"

Notes and Links
Comparison of SPMS & PPMS for assessing responsiveness to therapeutic interventions
MS Network - Learning you can live with PPMS
Description of typical PPMS symptoms
Diagnosing PPMS
Course of Primary Progressive w/ chart
Course of Progressing Relapsing w/ chart

Technical article about brain atrophy / EDSS
Technical article about central motor conduction
Technical article comparing disability w/ age at onset using Kaplan-Meier analysis