Primary progressive MS (PPMS) can be challenging to navigate, especially after a new diagnosis. Preparing questions ahead of time can help you get the most out of your next doctor’s visit.

A diagnosis of primary progressive multiple sclerosis (PPMS) can feel overwhelming. The condition is complex. MS often looks different from person to person, making it hard to know what to expect.

Still, there are steps you can take now to help manage PPMS and reduce the risk of complications that could affect your quality of life.

You can start by having an open conversation with your doctor. This list of 11 questions can help guide that discussion.

This is a common and understandable question after a new diagnosis. The exact cause of PPMS and all other forms of MS is unknown. Researchers believe environmental factors and genetics might play a role in the development of MS.

Research indicates that about 15% to 20% of people with MS have at least one family member with the condition. Smoking is also linked to a higher risk of developing MS.

Your doctor may not be able to pinpoint exactly how you developed PPMS, but they may ask about your personal and family health histories to gain a better overall picture.

PPMS is different in several ways. The condition:

  • causes disability sooner than other forms of MS
  • causes less inflammation overall
  • produces fewer lesions in the brain
  • causes more spinal cord lesions
  • tends to affect adults later in life
  • is overall more difficult to diagnose

According to the National MS Society, you may receive a PPMS diagnosis if you’ve experienced steadily worsening symptoms for at least a year, without any periods of remission, along with at least two of the following:

  • one lesion in the brain
  • two or more lesions in the spinal cord
  • an elevated immunoglobulin G (IgG) index in your spinal fluid

Unlike relapsing-remitting MS (RRMS), which involves flare-ups followed by periods of recovery, PPMS symptoms tend to gradually worsen over time.

There may be periods where symptoms stabilize (do not get worse), but they typically don’t improve or return to previous levels.

Lesions, also called plaques, are found in all forms of MS. These tend to appear more often in the spinal cord than in the brain.

Lesions form when the immune system mistakenly attacks myelin, the protective coating around the nerve fibers. These lesions develop over time and can be seen on MRI scans.

Research suggests that diagnosing PPMS can take up to 2 or 3 years longer than RRMS, according to the National MS Society. That’s largely due to the complexity of the condition and how gradually symptoms appear.

If you’ve recently received a PPMS diagnosis, it likely followed months, or even years, of testing and follow-up.

If you haven’t received a diagnosis for a form of MS yet, it’s important to know that identifying PPMS takes time. Doctors often review multiple MRIs over an extended period to detect changes in the brain and spinal cord that point to progression.

The National MS Society recommends getting an MRI and a neurological exam at least once a year.

These tests will help determine whether your condition is progressing, and if so, your care team can adjust your treatment plan accordingly. Tracking changes over time can also support early intervention, which may help delay disability.

Your doctor will tailor follow-up recommendations to your needs. If you start to experience new or worsening symptoms, more frequent visits may be necessary.

In PPMS, symptoms usually don’t come and go the way they might in relapsing forms of the condition. Instead, they tend to gradually worsen over time.

As PPMS progresses, the risk of disability increases. Spinal lesions, which are common in PPMS, can lead to mobility changes like walking difficulties. You may also experience increasing fatigue, mood changes such as depression, and trouble with memory or decision making.

In 2017, the Food and Drug Administration (FDA) approved ocrelizumab (Ocrevus) as the first disease-modifying therapy (DMT) for PPMS. It’s also used to treat relapsing forms of MS.

The FDA approved a newer, injectable form called ocrelizumab & hyaluronidase-ocsq (Ocrevus Zunovo) in September 2024 to treat PPMS and relapsing forms of MS. It’s generally given by a healthcare professional twice a year and takes just 10 minutes to administer.

Currently, ocrelizumab is the only DMT approved for PPMS. But research is ongoing to develop additional treatments that may slow the progression and protect nerve function.

Some people with PPMS explore complementary therapies to help manage symptoms. This may include:

  • yoga
  • acupuncture
  • herbal supplements
  • biofeedback
  • aromatherapy
  • tai chi

While therapies may offer relief for some, safety is important. If you’re taking medications, herbal supplements can interact with medications.

It’s also best to try movement-based practices like yoga and tai chi with certified instructors who have experience working with people with MS. They can help you modify any movements to suit your needs.

Be sure to talk with your doctor before starting any alternative or complementary therapies for PPMS.

Managing PPMS often involves a combination of:

  • rehabilitation
  • mobility assistance
  • a healthy diet
  • regular exercise
  • emotional support and mental healthcare

Your doctor may offer guidance in these areas and refer you to specialists, such as physical or occupational therapists, dietitians, or mental health professionals. Building a support team can help you manage symptoms and maintain quality of life over time.

There’s currently no cure for any form of MS, including PPMS. Treatment focuses on managing symptoms, slowing progression, and helping you maintain quality of life.

Your doctor can help you create a personalized care plan that suits your needs. Don’t hesitate to schedule follow-ups if you have questions or need to adjust your treatment.

A diagnosis of PPMS can feel overwhelming, but you’re not alone, and you’re not without options.

Coming prepared with questions can help you better understand your condition, build a stronger relationship with your doctor, and take an active role in your treatment plan.