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For Your Patients: What to Expect After a Multiple Sclerosis Diagnosis

— Worldwide, both patients and clinicians need increased awareness of MS symptoms

MedpageToday
Illustration of the letter i on a piece of paper over a hand over multiple sclerosis
Key Points

Multiple sclerosis (MS) is a chronic autoimmune disease that affects the central nervous system (CNS), which includes the brain, spinal cord, and optic nerves. In MS, your immune system attacks myelin, the protective cover that shields nerve fibers throughout your central nervous system.

As the myelin breaks down, the nerve signals may be disrupted, losing the ability to communicate with the rest of your body. Over time, this deterioration of the nerve fibers can lead to permanent nerve damage and loss of function.

Whether you've recently been diagnosed with MS or are still going through the diagnostic process, you may have noticed that making a diagnosis of MS can be complicated and even confusing. If so, you're not alone.

The authors of the Multiple Sclerosis International Federation , recently published global that found that delayed diagnosis of MS is all too common in most countries. "Diagnostic delays persist in MS care and even within national health care systems with robust resources," the authors noted.

Experts from 107 countries, representing approximately 80% of the world population, were surveyed. About 80% of the experts said their country had at least one major barrier to early MS diagnosis.

The top barrier overall was lack of awareness of MS symptoms. Approximately two-thirds of the experts said the public needed more knowledge of MS symptoms, while nearly 60% said the same of healthcare professionals.

Recognize the Symptoms

If you think you might have MS, see a neurologist as soon as possible. These medical doctors receive special training in diagnosing and treating patients with MS and other diseases of the nervous system.

One reason MS can be difficult to diagnose is that it is unpredictable. The symptoms can affect many systems within the body and can even come and go without treatment.

Some of the associated with MS are the following:

  • Visual symptoms: pain when moving an eye, blurred vision, loss of vision in one eye, and poor contrast or color vision
  • Motor symptoms: muscle weakness, stiff or rigid muscles, problems walking, and overactive reflexes
  • Sensory symptoms: numbness, tingling or "pins and needles" feeling, strange or unexpected sensations of physical touch, stabbing head pain, and a feeling of electrical shock when bending your head backward
  • Brain symptoms: balance problems, loss of coordination, and clumsy, shaking, or trembling movements
  • Urinary symptoms: urgency, retention, incontinence, frequent urinary tract infections, and constipation
  • Mental health symptoms: depression, anxiety, irritability, and "brain fog"
  • Other common symptoms: pain, fatigue, sexual dysfunction, and heat sensitivity

How Is MS Diagnosed?

One reason MS can be challenging to identify is that there is no single test to diagnose it. Your doctor will rely on a variety of tests to make the diagnosis. For example:

  • Medical history: Your doctor will start by taking a thorough medical history. That means learning about your current symptoms, as well as relevant symptoms you may have had in the past. The doctor will also ask about your family history and whether anyone in your family has had similar symptoms.
  • Physical examination: Your doctor will check a variety of physical systems to see how well your body functions overall. Checking your vital signs -- i.e., blood pressure, heart rate, and breathing rate -- will be part of that. The doctor will also listen to your heart and lungs using a stethoscope and may look inside your mouth and ears. The physical exam may also include palpating your abdomen for tenderness and listening to bowel sounds.
  • Neurological examination: Your doctor will perform in-office tests to see how well your nerves, muscles, and reflexes work. This exam will also check your balance and overall mental state, as well as how well your eyes react to light. Expect the doctor to tailor the neuro exam to your symptoms. For example, for one patient this may include walking in a straight line, swallowing, and being asked to remember a list of items. Another patient's neuro exam might place more emphasis on testing reflexes throughout the body and describing the sensation of having the skin touched with different objects.
  • Magnetic resonance imaging (MRI): This is the most important test for identifying areas of MS in your brain, spinal cord, and optic nerves. You will probably also receive an injection of contrast material before or during the test. The contrast material "lights up" any new and active MS lesions.
  • Spinal tap/lumbar puncture: In this test, the doctor will remove a small sample of fluid from your spinal canal to be analyzed in the laboratory. Analyzing cerebrospinal fluid can help narrow down a diagnosis of MS, while also ruling out other possibilities like infection.
  • "Evoked potential" tests: In these tests, visual or electrical stimuli help doctors measure the electrical signals the nervous system produces in response. You will watch a moving pattern while nerves in your arms and legs receive short electrical impulses. Electrodes measure how quickly your nerves transit the impulses.

Ruling Out Other Conditions

During the course of making a diagnosis of MS, your doctor will need to rule out other possible causes of your symptoms. Many other conditions can mimic common symptoms of MS. Some of these include the following:

  • Infection
  • Lupus
  • Vasculitis of the CNS
  • Sjogren's syndrome (a condition in which the immune system attacks the glands that make tears and saliva)
  • Lyme disease
  • Vitamin B12 deficiency
  • Stroke
  • Dementia

Your doctor may order blood tests and/or a lumbar puncture to help eliminate these other possible diagnoses.

Symptoms of MS can vary widely between patients. Even within the same person, they can vary over time. Getting an accurate diagnosis can be frustrating and time-consuming but is the crucial first step to getting the care you need.

"Medical Journeys" is a set of clinical resources reviewed by doctors, meant for physicians and other healthcare professionals as well as the patients they serve. Each episode of this journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.