Multiple Sclerosis Health Center

What to Expect With Primary Progressive MS

For Mimi Mosher, a person with primary progressive MS, clarity first came when she lost her vision.

Her eyesight steadily eroded by multiple sclerosis, Mimi now lived in a near-constant dusk. The realization came at a scary time. “I was driving. I thought, I can’t do this anymore. I had to pull off the road and let my friend drive,” says Mimi.

Until then, Mimi had been living “in a deep state of denial” about her advancing symptoms. As her primary progressive MS forced her to hand over her car keys, she remembers, “I knew I had to start planning for a future that included this disease.”

Primary progressive MS: Uncertain futures

Tens of thousands of people in the U.S. are living with primary progressive multiple sclerosis. For them, planning for the future includes all the usual worries: raising children, planning for college, changing jobs, buying a home.

And a few more: Will I be able to walk? Can I continue to work? How will I afford all the equipment I might need? Will I end up in a nursing home?

Planning for future life with primary progressive MS isn’t for the faint of heart. But there are practical strategies for dealing with the uncertainty and challenges of this chronic condition.

Feeling “left out in the cold” with primary progressive MS

People with primary progressive MS have a different illness -- physically and emotionally -- than other MS sufferers, says Rosalind Kalb, PhD, a psychologist with the National MS Society.

“The big thing I see is they feel left out in the cold.” She’s talking about all the advances seen with other forms of MS. “It’s almost like the message is, ‘it’s not for you’ -- not the new treatments, the new research. They’re even feeling left out by health care professionals -- it’s like ‘we can’t do anything for you.’”

The experience of primary progressive MS itself is different, too. Unlike people with other forms of MS, who have attacks followed by symptom-free periods, says Kalb, people with primary progressive MS have, from the beginning, been living with a disease that steadily progresses.

There’s no “bright side” to primary progressive MS. But the absence of sudden attacks may make primary progressive MS slightly less unpredictable than other forms of MS, which can strike suddenly and severely.

“Still,” says Kalb, “just knowing you’re living with a progressive disease doesn’t tell you how fast or how far.”

Progression rates for primary progressive MS are unpredictable

By definition, everyone with primary progressive MS has an increase in symptoms over time. But the rate of progression varies widely.

The proof of this came after researchers followed hundreds of people living with primary progressive MS for more than 20 years. Seven years after their diagnosis, 25% of people with primary progressive MS needed help to walk (for instance, a cane). At the 25-year mark, some people were bed bound -- but a quarter of the participants could still walk without help.