What is PPMS (Primary Progressive Multiple Sclerosis)? What you need to know if your symptoms are gradually worsening

Do you sometimes have difficulty walking, numbness in your limbs, or feel tired all the time for no reason? Do you also feel like these symptoms don't start suddenly, but gradually increase over time? Then it is very important for you to be aware of this condition called PPMS that we are talking about today. Although this is a bit complicated topic, we will talk about it very simply, in a way that you can understand.

What is PPMS simply?

Okay, first let's see what PPMS is. The word PPMS stands for `Primary Progressive Multiple Sclerosis` . This is a type of the disease `Multiple Sclerosis` ( MS ).

Simply put, Multiple Sclerosis (MS) is a condition in which our body's immune system , the system that protects us from disease, mistakenly attacks our own nervous system. This disrupts the flow of information between the brain, spinal cord, and the rest of the body.

There are now two main types of MS.

1. Relapsing-Remitting MS (RRMS): This is when symptoms suddenly get worse (we call this a `relapse`), then after a while the symptoms get better or go away completely (`remission`). It's like rain, it comes on suddenly, it falls off, and then comes back on again.

2. Primary Progressive MS (PPMS): The type we're talking about today, PPMS, is a different story. Here, symptoms don't suddenly flare up and then subside. Instead, symptoms gradually get worse over time. Like a drizzle, it gets a little wet and then gets really wet. Sometimes, symptoms can flare up, but that's rare.

Approximately 10% of MS patients have this type of MS, called PPMS.

What are the main symptoms of PPMS?

In PPMS, the symptoms may not be very obvious at first. But over time, they become more severe. These symptoms can vary from person to person. Let's take a look at the main symptoms that you may experience.

Why does PPMS develop? What is the cause?

In fact, the exact cause of MS or PPMS is still unknown, but researchers believe that it is a combination of factors.

• Genetic predisposition: If someone in your family has MS, you have a small risk of developing it too. But this is a very small risk. This means that it is unlikely that children will develop it just because their parents had it.
• Environmental factors: Exposure to certain viruses or bacterial infections is also believed to have some influence on the development of MS.
• Immune system activation: As we mentioned earlier, what happens here is that our own immune system damages the protective covering (`myelin sheath`) around our nerve cells . This damage disrupts the transmission of messages through the nerves.

How is PPMS diagnosed?

There is no single test that can confirm PPMS. A doctor diagnoses the disease by carefully examining your symptoms, medical history, and the results of several tests. This means that it is a process that takes some time.

Here are some of the main tests that are performed.

PPMS is usually diagnosed between the ages of 40 and 50, but the condition can occur at any age.

What are the treatments for PPMS?

There is no cure for PPMS yet. However, there are treatments that can slow the progression of the disease and make life easier by managing symptoms.

Treatment can be divided into two main parts:

1. Disease-Modifying Therapies (DMTs)

These medications work by slowing down the damage to the nerves caused by the disease and slowing down the rate at which the disease gets worse. One of the main DMTs approved for PPMS is ocrelizumab (Ocrevus®) . This medication can help control the rate at which symptoms get worse, to some extent.

2. Symptom Management

This is very important. Various treatments are used to control symptoms that affect daily life.

• Physiotherapy : Exercise and other treatments provide relief from muscle stiffness, weakness, and balance problems.
• Occupational Therapy: Teaches methods and devices to make everyday tasks (e.g., dressing, cooking) easier.
• Medication: Your doctor may prescribe various medications for symptoms such as urinary control problems, pain, fatigue, and depression .

Your doctor will develop a treatment plan that is right for you. Before starting any treatment, talk to your doctor about the possible side effects.

What to expect when living with PPMS?

PPMS is a condition that can have a big impact on your daily life. As symptoms worsen, you may need to make some changes to ensure your safety and avoid accidents.

For example, you may need to use a walker or wheelchair when you have difficulty walking. Remember, using these is not a defeat, it is a way to maintain your independence and help you do the things you need to do.

Living with a chronic illness like this can take a toll on you both physically and mentally. It's normal to feel sad and anxious. At times like these, talking to a mental health counselor and sharing your feelings with someone you trust can be a great relief.

PPMS does not directly affect lifespan, but complications of the disease can affect quality of life.

When should I see the doctor?

If you have PPMS, it's important to stay in regular contact with your doctor. Seek medical advice, especially if:

• If your symptoms get so bad that they affect your daily activities.
• If there is paralysis, persistent pain or numbness in the limb.
• If you fall and get injured due to loss of balance, go to the ETU (Emergency Treatment Unit) immediately.
• If the side effects of the treatment are severe.

Questions to ask your doctor

• Do I have PPMS or another type of MS?
• How can I manage my symptoms?
• Do I need physical therapy or occupational therapy treatment?
• What are the side effects of the medications you recommend?
• Will I need a mobility aid like a wheelchair?