MS Progressive Types: Primary Progressive and Progressive Relapsing

* Age at diagnosis - MS is usually diagnosed for people between 20 - 50 years old. PPMS is usually identified in the patient's late 30s or 40s.

* Gender ratio - MS affects women more than men. At one time the gender ratio was 2 to 1. In recent years, that ratio has increased to 4 to 1. MS is a woman's disease. Primary Progressive MS, however, has no such gender bias. Instead, the number of men and women with PPMS is close to equal.

* Location of abnormalities and lesions - PPMS begins in the spinal cord rather than the brain like the other MS types. There is a relative lack of brain lesions; that is, fewer lesions showing on the MRI over time, even though the PPMS patient may experience greater disability. There are fewer and smaller cerebral MRI abnormalities. Therefore, a spinal MRI may be invaluable to identify incidental white-matter abnormalities as well as to exclude compression of the spinal cord when eliminating other conditions on the route to a definite MS diagnosis.

* Cognitive difficulties - Because the disease is not centered in the brain, PPMS is less likely to include cognitive difficulties. PPMS is also not inflammatory as in RRMS. Cognitive difficulties in MS are similar to dementia in aging. Often the difference is largely a matter of time needed to process the activity. One study concluded RRMSers are slower than PPMSers and PPMSers are slower than healthy control subjects.

* Disease progression - Because the disease progression of PPMS is more steady than other forms of MS, it curtails the unpredictability factor that disrupts other MSers. An idea about what may be coming allows each person to prepare for it, and to adjust and accept the possibility or reality of disability. This provides a certain feeling of control.

No one can predict with certainty the degree of disability any individual will experience. MS is an individual disease, and one person's symptom cluster does not necessarily match that of another. The one absolute about Primary Progressive MS is that a relapsing/remitting period did not precede it. All of the other unique characteristics have exceptions. Every person must learn to live with their own version of MS as well as they possibly can.

Stories
Because I have no personal experience with Primary Progressive MS, I found stories of people living with it. I hope these help to illustrate the Primary Progressive MS experience.

Eve
Eve begins with visits to a chiropractor for back and neck pain, and for dropping a pen when she could no longer hold on. She thought she had a stroke and went through physical therapy. She bought a scroll mouse when she could not use her regular mouse, and the symptoms continued. Eve documented her early symptoms, diagnosis, and ongoing life with Primary Progressive MS.

Shelley Peterman Schwartz
Shelley hosts a regular TV show in Wisconsin where there is a high incidence of MS. She helps us remember that life goes on. Diagnosed as a young mother, Shelley made a great transition from the early dark days following her PPMS diagnosis to encouraging other MSers to enjoy the things they can.