Understanding MS: A Primer for the Newly Diagnosed (Part 1)
March is Multiple Sclerosis Awareness Month
In this three-part series, Understanding Multiple Sclerosis: A Primer for the Newly Diagnosed, Inova explores how individuals living with multiple sclerosis (MS) can live better physically, mentally and emotionally.
Part 1: Recognizing MS Symptoms
Part 3: 10 Ways to Live Better with MS
Rahul Davé, MD, PhD, is Medical Director, Multiple Sclerosis and Neuroimmunology Center in the Inova Neuroscience and Spine Institute.
Unlike many diseases, such as heart attacks or strokes, a multiple sclerosis (MS) diagnosis is not always black and white. It is caused by your body’s immune system being “confused” and attacking your brain and spinal cord instead of just bacteria and viruses. While symptoms usually start showing up in young adults, it can start as early as childhood and as late as individuals in their 70s.
Fortunately, advances in research and treatment mean that most newly diagnosed patients can do very well, and there are options for those living with MS to sustain a good quality of life for a long time.
Is it MS or MS Mimics?
Correctly diagnosing MS can be complicated since signs can vary from person to person, with no standard set of symptoms. Part of the confusion is due to the fact that MS symptoms can overlap with other neurological conditions including stroke, neuropathy, Parkinson’s disease or brain cancer. Furthermore, patients with autoimmune disorders such as lupus, rheumatoid arthritis, Sjogren’s, or sarcoid can develop MS or MS-like symptoms.
According to the National MS Society, common MS symptoms include:
- Numbness or tingling in limbs
- Pain and itching
- Muscle spasms or tightness (spasticity)
- Vision, bladder and bowel problems
- Cognitive changes
Although many people with MS don’t feel worse with temperature changes, symptoms that worsen with heat or exercise (or extreme cold) raise concern, as do neurologic symptoms in patients with autoimmune diseases. Ultimately, MS cannot be diagnosed by symptoms alone.
Because of this complexity, testing is critical in evaluating a patient with neurologic symptoms. The most important tool for an MS neurologist is a high-quality MRI scan. Lab tests, lumbar puncture (“spinal tap”) and other specialized tests, such as evoked potentials (which measures the speed of nerve messages to the brain) and OCT (optical coherence tomography, which measures eye function) can be helpful if performed and interpreted correctly.
A common misconception is that there is a single test that can confirm an MS diagnosis. Both inaccurate or missed diagnoses of MS are surprisingly common and lead to debilitating consequences.
The best way to ensure an accurate diagnosis is to seek a prompt evaluation by a neurologist who specializes in the treatment, evaluation and care of patients with MS. An MS diagnosis brings answers to some who have been wondering why they have experienced disturbing early symptoms such as fatigue, tingling, dizziness, weakness, memory problems, urination difficulty or trouble seeing.
Types of MS
Historically, MS has been divided into several subtypes. This classification was initially developed in 1996 by Prof. Fred Lublin based on a survey of neurologists who saw MS patients. At that time, we didn’t understand the biology of MS the way we do now, and a new classification system has emerged.
- Radiologically Isolated Syndrome (RIS): Asymptomatic MS. A patient without symptoms whose MRI meets specific research-based criteria (MAGNIMS 2017). Thirty to 50 percent of people with RIS eventually develop MS within 5 years.
- Clinically Isolated Syndrome (CIS), which includes optic neuritis or transverse myelitis. This is the first episode of MS-like symptoms, but the diagnosis of MS cannot be formally made. Many of these patients eventually are diagnosed with MS, neuromyelitis optica (NMO), MOG syndrome (anti-myelin oligoglycoprotein antibodies) or another autoimmune disease. Other causes include infections, vitamin deficiencies or unusual strokes.
- Relapsing-remitting MS (RRMS): The most common type, RRMS is marked by clearly defined episodes of new or worsening symptoms such as stiffness, bowel and bladder problems, or memory problems. These relapses are followed by remissions, periods of partial or complete recovery.
- Secondary-progressive MS (SPMS): When a relapsing-remitting patient progresses (often untreated or undertreated), they can eventually develop progressively worsening disability over time without clear relapses.
- Primary-progressive MS (PPMS): This is a rarer form of MS predominantly characterized by a gradually worsening disability over time (sometimes having relapses later).
It is critical to distinguish MS from neuromyelitis optica, MOG, other autoimmune diseases, infections, tumors, strokes and trauma. The terms CIS, RIS optic neuritis and transverse myelitis are commonly used as descriptors, but it is critical to search for the underlying cause.
If MS is diagnosed, it is characterized by the presence or absence of either relapses or progression:
- Relapsing disease is sometimes called “active MS” or “relapsing forms of MS.“ This is characterized by relapses — a few days to months of worsened symptoms with subsequent stabilization or improvement. An MRI showing new or enhancing MRI lesions can identify relapsing disease, even if symptoms are unchanged or gradually worsening. Active disease is caused by an overactive immune system attacking the brain and spinal cord, which “confuses” these structures with pathogens.
- Progressive disease is gradual worsening of functioning in the absence of symptomatic or MRI evidence of relapses. Progressive disease is caused by gradual shrinkage of the brain and nerve cell destruction.
One can have relapses without progression (RRMS), relapses with progression (active SPMS or active PPMS), or only progression (inactive PPMS or inactive SPMS). The reason for this new categorization is that relapses and progression are distinct biologic processes yet are linked.
The FDA and insurance companies are in the midst of changing their terminology to reflect this new understanding. In recent years, the FDA has gone back and changed the labeling on some medications (but not all and not in a systematic manner) to reflect this change. Unfortunately, these changes create complexities for patients and confuse physicians who aren’t specialized in MS.
An Accurate Diagnosis
While MS may have many mimics and symptoms, an MS specialist can make an accurate diagnosis and help improve your quality of life in the short and long term. You can discuss your concerns with your physician and possibly get referred for further evaluation from a neurologist who is trained as an MS medical expert at a comprehensive MS center.
Inova’s Multiple Sclerosis and Neuroimmunology program treats the entire range of neuroimmunologic diseases. This includes MS, neuromyelitis optica, transverse myelitis, optic neuritis, autoimmune encephalitis and CNS vasculitis. We also treat neurologic manifestations of sarcoid, lupus, RA, rheumatologic and infectious diseases.
To schedule an appointment with Inova’s Multiple Sclerosis and Neuroimmunology Program’s clinic, call 703-280-1234.
Our team includes neurologists, rheumatologists, infectious disease specialists, urologists, radiologists, rehab physicians and other specialists who work together to determine your care.
Inova is a designated member of the Consortium of Multiple Sclerosis Centers.
Living with MS is difficult. The condition is unpredictable, and symptoms come and go and affect people in different ways.
Read Part 2 of the Understanding Multiple Sclerosis article series here: Understanding MS Treatments Options.
Read Part 3 of the Understanding Multiple Sclerosis article series here: 10 Ways to Live Better with MS.