What needs to happen to change a RRMS diagnosis to Primary Progressive MS? Although my daughter recovers from a MS attack, her baseline seems to diminish leaving behind some permanent damage.
Primary progressive is an old term we try to no longer use. Anyone with relapses, if indeed your daughter has relapses, is Active. If we were still using the older disease type definitions, someone with relapses would no longer be primary progressive. The old classification system would call this individual Progressive Relapsing. The problem with this designation is twofold: First, Active means there is recent evidence of inflammatory activity by MRI or Clinical criteria. Therefore, you can be Active without relapses. Second, the older progressive relapsing category was applied to any progressive from onset patient who experienced a relapse at any time. This makes no sense today since we are primarily interested in the recent behavior of the disease, specifically the last 6-12 months. This is far more informative for treatment purposes.
If your daughter progressively worsens with interspersed relapses, a better designation is Progressive active. This usually (but not always) implies a need for highly active disease modifying therapies, particularly Natalizumab (Tysabri), Alemtuzumab (lemtrada) or Rituximab (Rituxan).
Hope this helps
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego