What to Expect After an MS Diagnosis: A Patient’s First 90 Days

Introduction

Receiving a Multiple Sclerosis (MS) diagnosis can be overwhelming, confusing, and emotional. Whether you've been experiencing symptoms for a while or your diagnosis came out of the blue, the first 90 days can feel like a whirlwind. In this guide, we’ll walk you through what typically happens in those crucial first few months—what to expect physically, emotionally, and practically—and how to navigate the journey with confidence and support 💪.

🌩️ The Emotional Impact of Diagnosis

🎢 A Rollercoaster of Emotions

The first reaction after hearing “you have MS” is often shock. You might cycle through denial, fear, anger, sadness, and even relief (finally having answers). These are all normal. It’s a form of grief—mourning the version of life you thought you’d have.

Tips:

Allow yourself to feel everything—don’t suppress your emotions.
Journaling, talking to a therapist, or joining an MS support group can help process this stage.

🫂 You’re Not Alone

In these early days, connecting with the MS community can be a huge relief. Talking to others who have “been there” offers insight and hope.

🩺 Understanding the Diagnosis

📋 The Diagnostic Process Recap

By now, you’ve likely undergone:

MRI scans to look for lesions on the brain and spinal cord.
Neurological exams testing reflexes, strength, and coordination.
Spinal tap (lumbar puncture) to look for oligoclonal bands.
Evoked potential tests to evaluate nerve response.

Understanding these results can empower you. Don’t hesitate to ask your neurologist to break them down in simple terms.

🧬 Knowing Your MS Type

Within the first 90 days, your neurologist will try to determine your type of MS, such as:

Relapsing-Remitting MS (RRMS) – the most common form, with periods of flare-ups and recovery.
Secondary Progressive MS (SPMS) – may follow RRMS with a more steady progression.
Primary Progressive MS (PPMS) – gradual worsening without relapses.
Clinically Isolated Syndrome (CIS) – a first neurological episode; not everyone with CIS develops MS.

Knowing your type guides treatment options and helps you understand what the future may hold.

💊 Starting Treatment: Disease-Modifying Therapies (DMTs)

🚀 Early Treatment Matters

One of the most important things you'll do in the first 90 days is choose a DMT. These medications aim to slow progression, reduce relapses, and limit new brain lesions.

Common DMTs include:

Injectables: Interferons (Avonex, Rebif) and glatiramer acetate (Copaxone)
Oral medications: Tecfidera, Gilenya, Aubagio
Infusions: Ocrevus, Tysabri, Lemtrada

Each has benefits and potential side effects. Your choice depends on your MS type, lifestyle, and risk tolerance.

✅ Questions to Ask Your Neurologist:

How effective is this treatment at preventing relapses?
What are the side effects?
How is it administered and how often?
Are there monitoring or blood tests needed?

🥗 Making Lifestyle Adjustments

🧘 Exercise & Physical Activity

Yes, you can—and should—still move your body. Physical therapy or gentle routines like yoga, pilates, or walking can improve balance, strength, and energy. Want to train at home? Click here.

🥗 Diet and Nutrition

While no "MS diet" cures the condition, anti-inflammatory eating patterns (like the Swank or Wahls Protocol) may help manage symptoms.

Helpful habits:

Increase omega-3s (fatty fish, flaxseed)
Limit saturated fats and ultra-processed foods
Focus on colorful fruits, veggies, and whole grains

Want supplements for people with MS? Click here.

💤 Sleep and Fatigue Management

Fatigue is a top symptom in MS and often misunderstood. Prioritize:

Sleep hygiene
Strategic rest breaks
Staying cool (heat worsens symptoms)

🧠 Cognitive and Emotional Health

🧠 Brain Fog and Cognitive Changes

In the first 90 days, you might notice:

Trouble concentrating
Word-finding difficulties
Memory lapses

These are common and manageable. Occupational therapists or cognitive training apps may help. Want supplements for people with MS? Click here.

🧘Managing Stress and Mental Health

Depression and anxiety are more common in people with MS. The uncertainty can be tough, so:

Consider therapy (CBT is effective). Want online therapy? Click here.
Try mindfulness or breathwork
Practice stress-reduction strategies daily

🗂️ Organizing Your Medical Life

📅 Building Your Healthcare Team

In your first few months, your care team may include:

A neurologist or MS specialist
A nurse coordinator
A primary care physician
Therapists: physical, occupational, mental health
Nutritionist (optional but helpful)

Start building a communication system (via apps or journals) to track your symptoms, appointments, and questions.

📁 Keeping Medical Records

Start a digital folder or notebook for:

MRI reports
Blood test results
Medication history
Symptom trackers

This makes it easier to manage care and share updates with new providers.

🛡️ Navigating Insurance and Costs

💸 Understanding Coverage

MS medications can be expensive. In the first 90 days:

Review what your insurance covers
Apply for copay assistance programs or manufacturer discounts
Ask your neurologist’s office about MS social workers or financial navigators

🌐 Helpful Resources:

National MS Society
MSAA (Multiple Sclerosis Association of America)
PAN Foundation or GoodRx

🧊 Exploring Complementary Therapies

Beyond traditional medicine, many explore complementary options like:

Cold therapy (cooling vests, cold plunges)
Breathwork and meditation
Acupuncture
CBD or medical cannabis (check local laws)

These won’t replace DMTs, but may improve quality of life.

🧭 What You Might Experience Physically

🔄 Flare-Ups vs. Progression

You may wonder if every new sensation is a relapse. Learn to distinguish:

A relapse = new/worsening symptoms lasting >24 hours, not due to fever/infection
Pseudo-relapse = temporary symptom return due to heat, stress, or illness

Track symptoms and report anything new to your doctor. Early steroid treatment can reduce relapse duration.

🧍Common First-90-Days Symptoms

Numbness or tingling
Dizziness or balance issues
Vision changes
Weakness or coordination trouble
Bladder urgency

Not everyone will have these, and they may vary day-to-day.

🗣️ Communicating with Friends and Family

📢 How Much Should You Share?

You decide how much you want to tell others. Consider:

Educating close family about what MS is—and isn’t
Asking for help when needed (ride to appointments, emotional support)
Directing them to MS resources so you don’t have to explain everything

💡 Sample Script:

"I have a chronic neurological condition called MS. It affects everyone differently. Right now, I’m learning what it means for me and what treatments can help. I may need some support, and I really appreciate your understanding."

💬 MS Community & Advocacy

🧡 Get Involved (If and When You’re Ready)

Connecting with the MS community can be life-changing. Try:

Online forums (Reddit’s r/MultipleSclerosis, Facebook groups)
Local MS Society events or virtual meetups
Advocacy or fundraising walks

Sometimes, simply reading others’ stories can offer comfort and courage.

🧭 Final Thoughts: You’re Still You 💫

Being diagnosed with MS doesn’t erase who you are. While your journey may look different now, you still have agency, strength, and a future worth planning for.

Yes, the first 90 days can be overwhelming—but they’re also an opportunity to learn, regroup, and prepare. With the right tools and mindset, you can live fully and confidently, with MS as a part of your story—not the whole story.