Progressive Multiple Sclerosis: What It Is and What Can Be Done

This article is for people who have progressive multiple sclerosis (MS), their care partners, and others who want to learn more about it. The goal is to help you understand the treatment options and how to work with your healthcare provider to decide which one is right for you.

You'll explore

• What happens with progressive MS -- its symptoms and prognosis

• The difference between primary progressive MS (PPMS) and secondary progressive MS (SPMS)

• How your healthcare provider diagnoses and treats PPMS or SPMS

• How to manage symptoms and what to ask your provider

With any kind of MS, your disease progresses (gets worse over time) as do your symptoms. Recovery is no longer complete and disability increases.

The 2 main kinds of progressive MS are:

Primary progressive MS (PPMS) -- affects about 1 in 10 people with MS

• Disability is already progressing when you're first diagnosed

• A slow but steady increase of disability with no relapses (attacks of symptoms)

Secondary progressive MS (SPMS) -- affects about 8 in 10 people with MS

• Can only be diagnosed after you've had relapsing-remitting MS (RRMS)

• A transition to having fewer, if any, relapses and less recovery

How fast your disease progresses differs with every person. Symptoms can vary somewhat between people with PPMS and SPMS. And with all progressive MS, some people will have more disability than others.

Talk with your provider about how to prepare for these changes. Having a plan of action can give you some peace of mind.

• Mobility problems -- gradual stiffness or weakness in your legs making it harder to walk and stay balanced

• Weakness -- dragging your leg or having trouble lifting your foot to walk (dropped foot)

• Spasticity and spasms -- extra muscle tension making your limbs feel painful, stiff, and hard to move

• Bladder and bowel problems

• Sexual problems

• Fatigue -- the most common and often disabling symptom

Some symptoms may not be obvious to your provider. Or, you may not report problems that you don't connect to MS or that may embarrass you. They can include

• Trouble thinking or remembering

• Anxiety and depression

• Sleep problems

• Sexual problems

• Bowel and bladder problems

• Sudden outbursts of uncontrolled laughter or crying (called pseudobulbar affect or PBA)

Be open and honest with your care team to address these issues right away.

It can take years for your provider to confirm a diagnosis. Diagnosing PPMS involves

• Physical exams -- to monitor changes in your symptoms for at least 1 year

• Testing -- including magnetic resonance imaging (MRI) scans, evoked potential (EP) tests (which measure how fast messages travel from nerves to muscles), and spinal fluid tests

• Blood tests -- to rule out other conditions that cause similar symptoms

This is because you've already had RRMS for a number of years. It can take several months for your provider to determine that your symptoms are gradually getting worse between attacks as you have fewer relapses. This is a sign that you've transitioned to SPMS.

You can help your provider monitor the changes in your symptoms over time. Keep a detailed MS journal. For each change you notice, draw a stick figure on a new page. Circle the problem area and jot down details about it. Review your journal with your provider at each visit. There are also apps for tracking symptoms, such as My MS Manager^™ and MS Self^™.

There is 1 approved disease-modifying therapy (DMT) to treat PPMS, called ocrelizumab (Ocrevus^®). Clinical trials have shown that this medicine may help

• Delay the progression of your disability

• Reduce the loss of walking speed

• Reduce the volume (amount) of brain lesions

You take this medicine by infusion (intravenously or "IV") through a needle left in your vein for several hours. After your first 2 treatments, you have one every 6 months. Talk with your provider about the common and more serious side effects of ocrelizumab.

You can keep taking a DMT -- as long as you still have relapses or if an MRI shows disease activity. DMTs don't cure MS, but they may reduce how often and severe your relapses are.

If your DMT is no longer controlling disease activity, your provider may recommend switching to a different one. Mitoxatrone (Novantrone^®) is IV chemotherapy approved specifically for SPMS, as well as for worsening relapsing MS (including PPMS). Talk with your provider about its serious safety concerns, including risk of heart disease and leukemia.

Try these strategies to help with some common symptoms of MS:

• Exercise -- helps with fatigue, sleep problems, bowel and bladder problems, and increases your sense of well-being

• Diet -- drinking plenty of water and eating healthy, high-fiber foods can help with bladder and bowel problems

• Keeping cool -- helps relieve some symptoms. Use air conditioning and avoid saunas, hot tubs, hot showers and baths

Rehabilitation therapy (rehab) eases the physical, psychological, and social impact of your progressive MS -- so you can keep living a full life.

Rehab professionals include:

• Physical therapist -- helps you strengthen weakened muscles and improve balance and mobility

• Occupational therapist -- improves your coordination and strength and shows you energy-saving strategies for daily living

• Speech therapist (pathologist) -- helps with problems with speech, chewing, and swallowing

MS can affect your thoughts, emotions, and personal relationships. To deal with these issues you may want to see a:

• Neuropsychologist -- connects problems related to how you behave or think to what's happening with your brain

• Psychologist -- counsels you for depression and anxiety

• Sex therapist -- can be a psychiatrist, marriage or family therapist, psychologist, or social worker

Some medicines target MS symptoms instead of the disease itself. Ask your provider which medicines can help with

• Spasticity or muscle stiffness

• Slow walking speed

• Fatigue

• Bladder problems

• Burning, painful, "pins and needles" sensations

• Depression, anxiety, and PBA

Be sure to discuss the common and more serious side effects of these medicines with your care team.

• How can you tell if my MS is progressing?

• Can I take medicine to help slow the progression?

• Can progressive MS affect my other health conditions?

• What kind of rehab do you recommend and when should I start it?

• What lifestyle changes should I make?

• How can I make my home safer from falls?

• What mobility aids do you recommend for me?

• How often should I follow up with my primary care doctor?

Congratulations!

You have successfully completed the program: Progressive Multiple Sclerosis: What It Is and What Can Be Done