If you have primary progressive multiple sclerosis (PPMS), you probably first saw a doctor because your legs were weak or you had trouble walking. Those are the most common symptoms of this type of MS.
Once it starts, PPMS gets worse over time. How fast that happens or how much disability it will cause varies a lot, so it’s hard to predict. Unlike some other types of MS, you won’t have relapses or remissions.
Only 10% to 15% of people with multiple sclerosis have this form. Those that do are usually diagnosed later in life than people with other types.
It can be hard for doctors to diagnose PPMS. This complex disease is different for everyone who has it. You may have symptoms for a few years, but no major flares, before doctors can tell you’re getting worse.
Symptoms of Primary Progressive MS
This disease mainly affects the nerves in your spinal cord. The main symptoms often involve:
- Problems walking
- Weak, stiff legs
- Trouble with balance
Other common symptoms include:
What Causes Primary Progressive MS?
Doctors think MS -- no matter which type you have -- happens when your body attacks itself. This is what’s called an autoimmune disease. In MS, your immune system damages myelin, the protective coating around the nerves in your brain and spinal cord. This causes inflammation.
But in PPMS, there’s little inflammation. Nerve damage is the main problem. Areas of scar tissue (your doctor will call them lesions), form along the damaged nerves in your brain and spinal cord. They can’t send and receive signals the way they should. This causes MS symptoms.
Primary Progressive MS Treatment
The medications siponimod (Mayzent) and ocrelizumab (Ocrevus) are approved to treat PPMS. They are first-line medications, which means you don’t have to try other therapies before you can takeeither of them. They can lower the number of cells in your blood that cause your immune system to go into overdrive and attack the myelin around your nerves.They slow the progress of primary progressive MS. With ocrelizumab, you take it as an infusion into a vein every 6 months. The most common symptoms are itchy skin, rash, sore throat, and a flushed face or fever. For mayzent, you take daily oral medications with a 5 day titration to start. With both treatmentsou might be more likely to get infections. More serious side effects are rare, but the drug has been linked to cancer, brain infections, and hepatitis B.
Your doctor will also focus on helping you manage your symptoms. You’ll take medications to help you with:
- Tight muscles
- Bladder and bowel problems
You’ll also get rehabilitation, such as physical, occupational, or speech therapy. It can help with:
- Speech trouble
- Swallowing problems
- Daily activities at home and at work
Take Care of Your Body
It’s important to stay healthy overall no matter which type of MS you have. There are no specific eating plans that help with MS, but a nutritious diet is always best. You should also try to stay at a healthy weight.
Exercise is also good for all types of MS. It can help you:
- Stay active and mobile
- Manage your symptoms
- Control your weight
Exercise can also give you more energy and boost your mood. Try different types of physical activity, such as:
- Brisk walking, swimming, or other gentle activities that get your heart pumping
- Exercises to improve your range of motion
- Stretching and strengthening moves
Start slowly. If you’re sensitive to temperature, be careful not to get overheated. And never exercise until you’re totally exhausted because it will take much longer to recover.
No matter which type of MS you have, ask your doctor to refer you to a physical therapist or physiotherapist. He can help you build an exercise program that's right for you.
Take Care of Your Mind
Besides the effects on your body, PPMS can take a toll on how you feel about yourself and the world around you.
Given all that you're going to deal with, it's not surprising that half of people with PPMS in one study had major depression at some point after their diagnosis. Sometimes it's caused by the disease itself, or it might be the result of what's been going on in your life.
A counselor or other mental health professional can help you work through the emotional struggles of living with MS, like navigating shifting relationships; coming to terms with grief, anger, guilt, worry, and loss; and finding the upside of challenging circumstances.
Practice being in the moment and appreciating what you have rather than stressing about what may come.
Just knowing you're not alone can make a big difference, too. Support groups can connect you with others who can relate to what you're going through. Check with your MS doctor for recommendations, or try the National MS Society.
With the right frame of mind, you can find and thrive in a new normal.
What’s the Outlook?
Over time, this disease will affect your entire body. You might notice:
- Both legs are stiff
- Fuzzy thinking
- Memory problems
- You’re tired all the time
- Stiff muscles
- Numbness or tingling
You’ll need to be mentally prepared for things you used to do with ease to get harder. Plan ahead -- look into transit options before you can’t drive. Find out what your insurance will cover. Be careful of what you drink and schedule bathroom breaks if you have bladder trouble.
Thanks to treatment breakthroughs, health care advances, and lifestyle changes, people are living longer than ever with MS. Doctors think the disease may shorten your life by a few years, compared with people who don’t have it. The biggest risk isn’t from MS, but from complications like heart disease and stroke. But these are easier to prevent with healthier food and more activity.