Understanding MS: Symptoms, Challenges, and What to Expect 🌙

Hello deer, this is Seri 🌸

🌿 Introduction: Let’s Talk About MS

This post is a gentle but honest look into Multiple Sclerosis (MS), a chronic illness that affects the central nervous system. I’ll explain what MS is, what causes it, how it’s diagnosed, and what symptoms can look like especially from my own experience with Relapsing-Remitting MS (RRMS).

We’ll also talk about how MS might change over time, what daily life can feel like, and why it’s not always visible to others. Finally, I’ll mention natural approaches that might help support the body, even if they can’t cure MS.

🌿 1. What is MS?

Multiple Sclerosis (MS) is a long-term condition that affects the central nervous system, mainly the brain and spinal cord. In MS, the immune system becomes confused and mistakenly attacks the protective covering around nerve fibers, called myelin. This protective layer normally helps messages travel smoothly between the brain and the rest of the body.

When the myelin is damaged, those messages can slow down or get mixed up, a bit like a train going off its tracks.

Because of this, MS can cause a range of symptoms. Some people might feel numbness, fatigue, or muscle weakness, while others might have trouble walking or experience blurry vision.

MS is different for everyone, and its course can be unpredictable : gentle or more intense, with quiet periods in between.ifferent people experience it in very different ways.

🌸 2. What are the types of MS?

There are several forms of MS, and they each have their own patterns.

Relapsing-Remitting MS (RRMS):

This is the most common form. People have flare-ups (relapses) of symptoms, followed by periods of recovery (remission).

Secondary Progressive MS (SPMS):

Sometimes RRMS slowly changes into this form, where there are fewer relapses but more steady progression of symptoms over time.

Primary Progressive MS (PPMS):

From the beginning, symptoms gradually worsen without clear relapses or remissions.

Progressive-Relapsing MS (PRMS):

A rare type where symptoms worsen steadily, but also have relapses. (Note: This is now usually grouped under PPMS with active disease.)

🌏 3. How many people have MS?

As of recent studies, about 2.8 million people worldwide live with MS. That’s about 1 in every 3,000 people. It’s more common in women, and usually starts between the ages of 20 and 40, although it can happen earlier or later too.

In Japan, MS used to be considered quite rare… but that’s slowly changing.

🌬️ 4. What causes MS?

The exact cause of MS is still a bit of a mystery. Many researchers believe it happens because of a delicate mix between someone’s genes and the world around them. Some things that might increase the risk include:

🌱 A family history — meaning MS may be slightly more likely in certain families

🌱 Some childhood viruses, like the Epstein-Barr virus

🌱 Not getting enough sunlight or vitamin D : MS tends to be more common in colder, less sunny places

🌱 Smoking, which might make the chances a little higher

It’s important to remember: MS isn’t contagious. You can’t catch it from someone else.

🇯🇵 5. MS in Japan

In Japan, MS is less common than in Europe or North America, but the number of cases is rising especially in urban areas like Tokyo or Osaka.

According to data from the Japanese Society for Neuroimmunology, approximately 17,600 Japanese nationals are living with Multiple Sclerosis in Japan. The estimated prevalence is 14.3 per 100,000 people .

Another Japanese patient support group reported a similar figure around 18,000 Japanese MS patients based on a 2017 national survey .

This reflects Japanese citizens living in Japan, not counting non-Japanese residents or Japanese who live abroad.

MS is more prevalent in women than men in Japan, with the female-to-male ratio increasing over time. In 2021, for every man with MS, there were four women with the condition .

🌏 Why is MS increasing in Japan?

1. Better awareness and diagnosis

In the past, MS was often misunderstood or misdiagnosed in Japan, sometimes confused with other neurological conditions like NMO (neuromyelitis optica).

Today, doctors have better tools (like MRI) and more knowledge, so they’re identifying MS more accurately and more often.

2. More Westernized lifestyles

Diets and habits in Japan have changed over the past few generations, becoming more Western (more processed food, more saturated fat, less fish or traditional ingredients).

This shift may be influencing immune function or gut health, both of which are linked to autoimmune diseases.

3. Less sunlight exposure = Less Vitamin D

Many people in urban areas get less sunlight now due to indoor work and modern life.

Low vitamin D levels are considered a risk factor for MS. Japan’s northern regions (like Hokkaido) have higher rates of MS than southern ones, possibly due to this.

4. Hormonal and gender patterns

MS is becoming more common in women worldwide, and Japan is no exception.

Shifts in hormone-related patterns (like later childbirth, fewer pregnancies, or environmental endocrine disruptors) could be playing a role.

5. Environmental and unknown triggers

Some experts think viruses like Epstein-Barr, changes in gut bacteria, or even air pollution could affect immune systems but this is still being studied.

🩵 6. Is MS curable? If not, why?

Right now, there is no cure for MS.

Scientists haven’t yet found a way to completely stop or reverse the damage it causes to the nervous system. That’s because MS is very complex, it involves the immune system, the brain, the spinal cord, and a delicate protective layer called myelin.

But even though it can’t be cured yet, there are treatments that can help slow the disease down, ease symptoms, and make daily life more manageable. Many people with MS live active, fulfilling lives with the right care and support.

🌫️ 7. Can someone die from MS, or become disabled? Is daily life hard?

MS itself doesn’t usually cause death directly.

Most people with MS live many, many years, often close to a normal life span. But it can cause serious difficulties, especially over time.

Because MS affects the nerves that control the body, some people do become disabled, like needing help to walk, struggling with fatigue, or losing fine motor skills.

It depends on the type of MS and how fast it progresses. Some people have very mild symptoms, while others experience more challenges.

Daily life can be hard with MS, especially during flare-ups. Tasks like dressing, working, or even holding things can become exhausting. But with support like physical therapy, mobility aids, medication, and a kind environment, many people learn to adapt.

🔍 8. How is MS diagnosed?

There’s no single test that can say “You have MS”, it’s more like putting puzzle pieces together carefully.

Doctors usually start with a detailed check-up and ask about your symptoms. Then they use special tools like:

MRI scans to look at the brain and spinal cord. These can show spots where the myelin is damaged (like little scars).

Lumbar puncture (spinal tap) to check the fluid around the brain and spine for signs of unusual immune activity.

Evoked potentials, which test how quickly your nerves react to light or sound.

But MS can be tricky : symptoms come and go, and can look like other illnesses. So doctors need time, evidence, and patience. They often wait to see if there are changes over months or years, to be sure.

🌷 9. What type of MS do I have? (Seri’s story)

I have Relapsing-Remitting Multiple Sclerosis (RRMS), the most common type of MS, especially in the early years. It means my illness moves in waves:

✨ Relapses, where symptoms suddenly appear or worsen, and

🍃 Remissions, when those symptoms calm down, improve, or even disappear for a while.

During a relapse (also called a flare-up or exacerbation), inflammation in my brain or spine causes different problems depending on which nerves are affected.

🌿 Common Symptoms I Experience with RRMS (Relapsing-Remitting Multiple Sclerosis)

MS touches many parts of the body and mind. It can change from day to day, and some symptoms come and go depending on relapses, heat, stress, or even movement. Here’s how it feels in my world:

💤 Fatigue

This isn't regular tiredness. It's a deep, draining exhaustion that can appear even after resting. Sometimes it feels like my body is moving through thick fog, and even simple tasks become too heavy.

🦵 Weakness

Often in my arms or legs, as if my limbs suddenly lose strength or feel like jelly. It can make walking, lifting, or even holding things more difficult.

👀 Blurred Vision

My eyesight sometimes becomes cloudy or unfocused. It's not just needing glasses, it feels like my eyes aren’t connecting properly with my brain.

🌪️ Dizziness or Vertigo

There are moments when the world spins, even when I’m standing still. Sometimes it’s like being on a boat, swaying even when everything around me is still.

⚡ Nerve Pain & Itchy Skin

I get sharp, shooting pains or odd tingling, like tiny electric zaps. My skin may itch deeply without a visible reason, it’s not like a regular rash, but more like a nerve signal misfiring.

🧠 Cognitive Changes

Sometimes I struggle to concentrate or forget things I normally wouldn’t. It can feel like my mind is wrapped in cotton, making it hard to think clearly or find words.

🌞 Heat Sensitivity

Warm weather, hot baths, or even a fever can make my symptoms worse. Blurred vision, fatigue, or weakness may flare temporarily.

🚽 Constipation & Bowel Problems

My digestive system can become slow or irregular, making bowel movements difficult. It’s not often talked about, but it’s a real and frustrating part of MS.

🌧️ Mood Changes

Depression, sadness, or sudden emotional shifts can come without warning. It’s more than just feeling "off", it's like my emotional compass spins in unpredictable ways.

⚡ Electric-Shock Sensations

Sometimes when I bend my neck forward, a jolt-like shock runs down my spine or into my limbs. This is known as Lhermitte’s sign and can be startling.

🚶 Trouble Walking (Recent)

My legs may feel weak, unsteady, or heavy. Lifting my feet can feel harder, and my steps may become slower or awkward. It's a newer symptom, and I'm learning to adapt gently.

🗣️ Slurred Speech

At times, my words don’t come out as clearly. It’s not because I forget them, it’s like my mouth and brain aren't syncing well, especially when I’m tired.

🔥 Hot Feet (Very Recent)

A burning sensation in my feet, as if I’m walking on embers. This heat doesn’t come from outside but feels like a fire from within, painful and sudden.

🧠 How MS Affects the Stomach and Digestive System

MS primarily attacks the central nervous system, the brain and spinal cord. But the nerves that control digestion also come from there, especially from:

The autonomic nervous system (which manages things like digestion, heart rate, and bladder function)

The vagus nerve, which connects your brainstem to your digestive organs (stomach, intestines, etc.)

If MS damages the pathways or areas involved in this system, it can cause:

🌪️ Digestive Symptoms Common in MS

1. Constipation

Probably the most common. This happens because:

🌙The muscles in the colon move slower.

🌙You may have weaker abdominal or pelvic floor muscles.

🌙Some MS medications can make it worse.

2. Stomach pain, cramps, or bloating

🌙Nerve misfiring or slowed digestion can lead to:

🌙A feeling of fullness

🌙Cramping or pain

🌙Bloating after meals

3. Gastroparesis (delayed stomach emptying)

This is when food moves too slowly through the stomach. You may feel:

🌙Nausea

🌙Full quickly

🌙Burping, acid reflux

🌙Unpredictable appetite

MS-related vagus nerve damage may contribute to this.

4. Swallowing difficulties (dysphagia)

If MS affects the muscles in your throat or the nerves that coordinate swallowing, food might feel stuck or go down wrong.

5. IBS-like symptoms

Some people with MS report alternating:

🌙Constipation and diarrhea

🌙Cramping and urgency

🌙Abdominal discomfort after certain foods

Even if it’s not “official” IBS, it can feel similar.

6. Loss of appetite or nausea

This could be from:

🌙MS flares

🌙Medications (some cause nausea or taste changes)

🌙Anxiety or depression affecting your gut-brain connection

🧬 Why Does This Happen in MS?

MS causes inflammation or scarring (lesions) in areas of the brain or spinal cord that control digestion and bowel function.

Damage to nerve signals interrupts how your digestive system knows when and how to contract or move food.

It may also affect your pelvic floor and abdominal muscles, making it harder to “push” during bowel movements or control urgency.

🌸 Every day with MS is different.

Some mornings are easier. Some days feel stolen by fatigue, or by a body that doesn't quite respond the way I want.

After a relapse, there’s often a time of remission, where things feel more stable. Sometimes I can return to my usual activities, but not always. Some damage may remain, and over time, it can quietly build up.

🌊What Might Come Later: More Details on Secondary Progressive MS (SPMS)

1. What is SPMS?

Secondary Progressive MS is a stage that some people with Relapsing-Remitting MS eventually enter after many years. It means the disease’s behavior changes from having clear relapses (flare-ups) and remissions (periods of stability) to a more continuous, steady worsening.

2. How Symptoms Change:

In RRMS, you have attacks where symptoms get worse suddenly, then improve partially or fully during remission.

In SPMS, the relapses may become less frequent or stop entirely, but the overall level of disability slowly increases over time.

Symptoms worsen gradually and steadily, without the clear breaks of recovery seen in RRMS.

This progression can affect walking ability, strength, vision, coordination, and other neurological functions.

3. Why Does This Happen?

The immune system still causes damage to the nerves, but the damage shifts from inflammation to ongoing nerve degeneration.

Nerve fibers and the protective myelin coating become damaged beyond repair, causing lasting problems.

The brain and spinal cord have less ability to compensate for the damage.

4. How Long Does It Take to Develop?

This varies widely. Some people may live with RRMS for 10, 20 years or more before SPMS starts.

For others, it may happen sooner or never at all.

5. What Are the Signs That RRMS is Becoming SPMS?

Less obvious relapses or flare-ups.

Steady worsening of symptoms, such as increasing weakness, difficulty walking, or worsening fatigue.

Symptoms that don’t improve as much after flare-ups.

New symptoms may appear slowly and stay longer.

6. Does Everyone with RRMS Develop SPS?

No. Many people live many years with RRMS without progressing to SPMS.

But statistically, after many years, a large number of people do experience this shift.

7. What Does This Mean for Daily Life?

Living with SPMS can be harder because symptoms worsen steadily.

It may require more support for mobility, daily tasks, and symptom management.

Adjusting treatment and care plans is common.

🧪 Can MS Be Treated Naturally?

No. Multiple Sclerosis (MS) cannot be cured or fully treated with natural remedies alone.

It’s a complex neurological condition that requires medical treatments, especially in the case of Relapsing-Remitting MS (RRMS), to reduce inflammation and prevent long-term damage.

However, some natural approaches may help manage symptoms or support overall well-being. These are not substitutes for medical treatment, but they can be gentle companions to it.

🌿 What Natural Options Might Help?

Here are a few research-supported natural supplements or substances that some people with MS use alongside their treatment:

🌞 Vitamin D

It won’t cure MS, but there is strong and consistent evidence that low vitamin D levels are linked to worse outcomes in MS. Many neurologists recommend supplements as part of treatment.

🌱 CBD (Cannabidiol)

It doesn’t treat MS itself or stop it from progressing, but some people do get relief from muscle stiffness, nerve pain, or sleep issues. It's symptom relief, not a cure.

Probiotics

These beneficial bacteria can improve gut health, potentially triggering an anti-inflammatory response and protecting neurological health.

🍵 Green Tea Extract (EGCG)

It’s an antioxidant and may protect nerve cells a little. It's safe, but not a strong treatment. Think of it more as a tiny helper than a therapy.

Dietary Changes 🍲:

Swank diet

This diet, which emphasizes unsaturated fats and limits saturated fats, has been linked to better long-term outcomes in some individuals with MS.

Omega-3 fatty acids

Found in fish oil, omega-3s have anti-inflammatory properties and may help protect the central nervous system.

Exercise and Movement 🏊🏻‍♂️ :

Regular physical activity

Studies show that exercise can improve MS symptoms, reduce fatigue.

Stretching and balance exercises.

Can improve mobility and muscular control, particularly helpful for individuals with balance issues.

Swimming and other adaptive sports

Provide low-impact exercise options for people with MS.

Complementary Therapies 👩🏻‍⚕️ :

Acupuncture: May help alleviate symptom severity by releasing endorphins and peptides in the brain.

Other Natural Options ❄️:

Warm or cold compresses: Altering body temperature can help shift the sensation of pain

Lukewarm baths with Epsom salts and colloidal oats: Can soothe the skin.

Epsom salts contain magnesium, which some people find helps relax muscles and reduce stiffness or spasms. The warm water itself can ease tension and improve comfort.

Colloidal oats are known to soothe irritated or itchy skin, which can be a symptom for some with MS. They help calm inflammation and dryness.

🌿 Some natural things might help a little but they don’t treat MS itself.

They don’t stop the disease or prevent disability like proper MS medications can. But… they can make you feel a little better in daily life.

Here’s how to think of it:

🍃 What natural things can do:

Support your immune system gently (like Vitamin D).

Reduce general inflammation a little (like Omega-3 or Curcumin).

Soothe symptoms such as pain, mood changes, sleep trouble (like CBD or Magnesium).

Help your energy and mood (gentle exercise).

❌ What they cannot do:

They do not stop relapses.

They do not repair damaged nerves.

They do not stop progression of MS over time.

They are not enough on their own.

💬 So... do they help?

Yes, a little. For comfort, not for control.

🌺 In Summary:

> “Natural” doesn’t mean “effective” by default but certain supplements may gently support your body and mind. They are helpers, not healers.

🌑 Why is MS Hard to Live With?

1. Because the Symptoms Are Constantly Shifting and Invisible

MS symptoms are not only painful or tiring, they’re invisible to most people around you. That makes it even more isolating.

Here’s what “just a symptom” really means:

Fatigue: This is not being tired from a long day. It’s like walking through deep water while your body is made of heavy metal. No amount of rest “fixes” it.

Dizziness and vertigo: Makes it feel like the floor is moving or your head is floating. It’s hard to do simple tasks without fear of falling or fainting.

Vision problems: Blurry vision or eye pain makes reading, driving, or even watching something difficult.

Weakness or walking issues: Even if your legs “work,” they may feel like jelly. This can come and go without warning, which makes planning hard.

Heat sensitivity: Something as simple as a hot bath, summer weather, or a fever can suddenly make all your symptoms worse.

Cognitive problems (“brain fog”): Forgetting words, trouble concentrating, or slow thinking can feel like your mind is underwater. That’s frustrating, especially if you used to be very sharp.

Electric-shock feelings (Lhermitte's sign): A sudden shock down the back when you move your neck. It’s startling and uncomfortable.

Hot or burning feet, nerve pain, and itching: Sensations that can’t be soothed. They keep you from sleeping, resting, or relaxing.

Slurred speech or coordination loss: Can make people misunderstand you or think you’re “off” when you’re actually fighting to stay steady.

2. Because It’s Unpredictable

One day you can go for a walk, and the next you can’t get out of bed.

Plans often have to be canceled, not because you’re unreliable, but because your body suddenly says “no.”

It’s like living with a shadow, never knowing when it will stretch further.

3. Because It’s a Lifelong Battle With No Cure

There’s no “finish line” or guaranteed path.

Even when symptoms improve, you know they might return. This uncertainty creates a quiet anxiety every single day.

You may go years with remission, then suddenly start to worsen especially if RRMS becomes SPMS.

4. Because People Often Don’t Understand

People might say:

“But you don’t look sick.”

“You’re just tired.”

“Everyone forgets things sometimes.”

“Some have it worse.”

These comments feel invalidating. MS can make you feel like you have to prove your suffering… which is exhausting in itself.

5. Because It Steals Pieces of Your Identity

If you were active, creative, social, it may feel like parts of yourself are slowly slipping away.

You may not be able to work, study, dance, or care for yourself the way you used to.

There’s grief in losing the version of you that felt “whole.”

And this grief can come again and again each time a new symptom arrives or worsens.

6. Because You Have to Keep Explaining It

MS is complex.

You’re constantly asked to explain what’s wrong, why you need accommodations, or why you cancel plans.

That emotional labor — always educating others — becomes heavy over time.

7. Because Mental Health Is Affected Too

Depression and mood swings aren’t “just emotional.” They’re part of the disease process (inflammation in the brain) and a response to the challenges of chronic illness.

Losing independence, confidence, or the ability to do what you love can lead to a deep sadness.

And this sadness is rarely acknowledged by others.

🫧 In Summary

MS isn’t just about symptoms, it’s about living in a body you can’t always trust, in a world that doesn’t always understand.

So yes… MS is hard. Because it’s genuinely a challenging condition. And if someone dismisses it, it’s not because your struggle is small, it’s because they haven’t opened their heart enough to truly listen.

🌙 Conclusion

MS isn’t always visible, but it’s very real. It brings pain, exhaustion, and emotional struggles that can’t be seen from the outside. There may be no cure yet, but with care, support, and understanding, it’s possible to keep going, one step, one day at a time.